C/O 18 The Oaklands
Church Eaton
Stafford
Staffs
ST20 0BA
United Kingdom

NB: this is a forwarding address for the Pal, we do NOT disclose home addresses

Email Pal

Harry G's Parents/Guardians

Suzanne (Su)

Harry G's Siblings

Eleanor 12/04/1996, likes books, art, make-up and music.

Harry G's Interests

Water play, sand, paint, play-doh, exploring, sensory things i.e. lights, bubble tubes, balls (of all types, the bigger the better though!), battery operated toys that zoom round the floor, old fashioned radio cassette type toy (he keeps wearing his ones out, can be with cassette or cd), toys which have buttons that play songs or numbers keep him happy for hours. Action and reward toys. Cars - ones he can push and spin the wheels around on! 'Cause and effect' toys - involving pressing a button for an action. i.e. musical keyboard.

Harry G's Favourite Colour

Red

Is Harry G able to read?

No

Is Harry G able to use hands?

Yes

Is Harry G visually/hearing impaired?

No

Does Harry G suffer from any developmental delay?

Yes

Development Delay

Severe global delay. At his Special Needs School, he inconsistently scores the lowest P-level

Favourite type of post?

Postcards

Story written 2004

Harry can have seizures any time of the day or night and has severe brain damage and learning disabilities (severely globally delayed with progress at great delay). However, he still loves to play on his special swing, or listen to Mozart when he’s not feeling very good as it makes him relax. He does walk but in a very unbalanced and un-coordinated way, when the weather is good he likes to go out for little walks for a short distance with his mum. He is unable to speak or communicate other than ‘happy’ or ‘not happy’ but often laughs and smiles, with abundance of personality. When themed art Posty Projects arrive, Harry’s sister Eleanor who is 8, makes them up and puts them in Harry’s room. Together, Eleanor and Harry’s mum Su, tell Harry who they are from, point to the colours and tell him all about them. They hope he understands just a little of the thought behind them. Posty doesn’t just help Harry, the support means so much to all three of them (Harry’s Dad chooses not to be with them, and his Nanny and Auntie live in Denmark). Maybe Harry is not so bad when you think that a typical ‘West’ child often has no head control and is unable to talk, walk or self assist. Everything Harry has is ‘special’. A special trike, a special large cot, a special highchair, special shoes, special car seat. But then, Harry is special and is much loved by his sister and mum.

Story update 2007

Harry is now just before 6 years of age and in the 5 years 10 months since epilepsy came to him, we have adapted, changed, cried, moved, learnt to live with epilepsy and found new achievements for him. We have explored any and every avenue to improve life for and with Harry - and I think we stand victorious in the original prognosis of no mobility or neck control! We have achieved victory after victory with the Statutory Services and they have come to realise that we indeed know better than they regarding what Harry needs. Harry has been on the Ketogenic Diet now for 2 1/2 years of which we've had two years completely fit free. This is a unique achievement, as most people hope for just a small improvement. There is an enormous amount of damage to Harry's brain and Harry will probably always need assistance with a lot of things. But as Harry gains in abilities, the need for everything adapted becomes less than it was.

Update 30th April 2008

April has seen the last attempt of winter, but it looks like spring is winning at last! Harry is enjoying more time outside and being swung patiently on his new swing. We have tried one or two different designs but have given up the more modern steel tube ones for the more traditional wood, as this is much stronger and Harry can swing without the frame coming out of the ground!

April also saw Ellie turning 12 in Pizza Hut style and a swim party too. She had a great day with lots of presents from our Post Pals friends to whom we extend our gratitude. The round of thank you's include our ever faithful Kate Dee, Karen for the growing friends, John for his cool facts that make us laugh, some super playdough and a super fast car from Hanna, a new friendship from Abbie to Ellie as well as a beautiful card from Kat M to Ellie - your card is on Ellie's desk, not sure if she has written to you yet as she's drowning in homework and end of term exams but your hometown isn't far from ours :-) and lastly, our love goes to Linda B from Torcross too.

Harry is making some progress with the new intensive interaction as per speech assessment at school. He has been given some signs to work with and has taken a liking to the one meaning 'Register' and the taking of the register up to the office. He manages this now with minimal help and received 'Pupil of the Week' for his hard work. School insists he is making lots of different sounds and some new gestures too - I experience a lesser success rate at home but am assured this is normal. However, I have taken Harry to town twice now without using the wheelchair. We didn't shop around all day or anything, but had a small planned walk and he did this fine! We have to stop to sit down every now and then but this is still very good!

We are on a respite break at the end of May and are hugely look forward to this! We haven’t had a week off for a year now and so much has happened with Ellie going up to high school and Harry too.

On a final note, so many have told me for years to write Harry's story and make a book. Well, I did listen and I've mulled it over now for ages and thank you for your faith in me - yes I will write Harry's story. So, if you know of anyone daft enough to publish it, please let me know! I've made a start and a friend has read what there is so far and I feel confident to carry on, but as to finding a publisher! I'm in the dark here so any help is very welcome and appreciated!

Update 2nd April 2008

There's still no news on the respite. We have had one very detailed report by an independent person put together on our caring for Harry with hour by hour account of how Harry's disability affects our lives. Then we had another report by local Health, but by no means as in depth or thorough, but more an insight into our lives. And another month has ticked by without a decision of whether they will or will not reduce the help we receive...

It's been a nice month though with the promise of spring after a last attempt by Mr Frost to make it bitterly cold and windy! With the turn of the clocks, the temperature also rose enough to not have to wear hats, scarves and gloves in an attempt to avoid frost bite and we enjoyed an afternoon pondering around the garden centre looking at all the lovely coloured plants. The Easter bunny decided to lay his eggs inside as even he thought it too cold - so we went hunting inside!

We had some beautiful cards from Karen, Helen, Kate Dee, Elizabeth and Jack, Erin F's Nanna and Grandad, Maria and Michael, Julie Barrett and from John we got tongue twisters and amazing facts! Thank you all round! 

Harry is back to school earlier than Ellie, so she is really looking forward to some Mummy time for a whole 3 days as well as her birthday! She is turning 12 and has persuaded me to let her take some friends swimming and a pizza afterwards. She is so excited!

We are doing a last attempt speech wise with Harry this term. We have worked hard putting a program together consisting of interactive time followed by picture prompts for certain activities Harry likes. I am convinced he understands our speech, words and ways of communicating, but he is unable to join our way which this program is designed to aid him. Even if it fails, it does not mean that we have failed, just that Harry isn't ready. It might just be that we try and try and try, nothing happens and when we least expect it... 

We are really looking forward to Viks BBQ idea in July and plan on being there! It would be so nice to meet some of the other guys involved in Post Pals! We have been involved for such a long time now that Post Pals are kind of part of the family.

Wishing everybody a lovely spring with lots and lots of outdoor weather!

Update 2nd March 2008

February always keeps me on my toes with so much going on! Pancake Day, Valentines, half term and not forgetting my birthday (21 again in case you wondered) and it's the shortest month of the year with so much packed into!

Harry and Ellie got a Valentines card each - I suspect Post Pals related, however, that is just my guess. Ellie was truly puzzled but quite chuffed! Ellie attended the first Valentine's Disco where the boys and girls schools met up - she got asked out 5 times but said 'no' to them all ;-)

Harry had his Annual Review with school and it is becoming apparent that the damage to his brain from West Syndrome has left him more in the 'profound' classification as opposed to 'severe'. We are slowly implementing a new speech program being acutely aware Harry is probably not ever going to speak, but it's worth a try anyway. He already communicates by different means - if he wants to go outside, he'll bring me his coat or one shoe. If he wants a toy turning on, he'll bring the toy to me or pull my hand towards what he wants. I am mindful to the new complication of Harry being on the autistic disorder spectrum and have requested his Statement of Needs to be re-done as well as a closer look at what they actually do with him at school. I have also requested the local Child Development Clinic to observe Harry as to find out the more exact detail of the autism so the rest of Harry's care and provision in school can now reflect this. As I always instigate all these things, it often makes me wonder what happens to those children where Mums and Dads are not as involved as I am with children...

We still battle on with the respite issue... no decision has been made yet, so we wait to see what their findings are going to be.

We've had some great mail this month and some super presents too! Harry has been asked to join a new group meeting on a Wednesday behind the shed ;-) Harry says can we not meet on a Saturday morning because it's going to be hard fitting it in on a Wednesday! xxx

Update 4th February 2008

We attended the speech appointment at Great Ormond Street this month to see if we could find out if Harry is actually likely to speak and also as I'm so unhappy about our local Speech and Language Therapy service locally. They reckon as 'Harry is motivated by cars, his adult helper should say ''beep'' five times, look expectantly at Harry and wait for him to say ''beep'' back'. Personally I'd have preferred 'Mum' or 'I need the loo' to 'beep' but there you go. So, this is assuming Harry knows how to react to an 'expectant' look...

It soon became clear that the Professor agreed with me and that Harry has a streak of autism which is now diagnosed. With that came the answer all by itself as to whether Harry is likely to speak - no. They also suggested the school Harry goes to may not necessarily be the best one for Harry and that his Statement of Educational Needs should be updated. So back to letter writing and meetings!

We are also at long last having Health carry out their investigations into keeping respite unchanged. I'm pleased to say it was started off by a really nice lady, working independently and therefore unbiased to the financial state of respite, who carried out the most thorough insight into our lives with Harry. So, I am hopeful someone will listen!

Harry is having his diet adjusted and changed to be more accurate, and with that, his ketones are leveling out too. He seems unaware of the background work to make this possible! 

Otherwise, we carry on with our day to day routine through all kinds of weather as no two days seem the same anymore with Ellie having tons of homework which keeps her out of mischief! We are greatly looking forward to the half term to get a breather ;-)

Our thoughts are particularly with a special person with many names, Kate Dee, who is going through a tough time at the moment but always finds time to think of us too. Stay strong Kate!!

Update 18th January 2008

Harry is now successfully totally OFF any medication except his Ketogenic Food which is being reviewed and fine-tuned. He remains seizure free!! Having steady and good results on the diet, I knew to anticipate the withdrawal of Phenobarbitol, which Harry has been on since his eye operation in 2005. My anxiety about reducing his medication week by week was still great though and we all kept a close eye on Harry in case he would have a seizure, but the opposite seems to have happened! He is far more alert generally, with small improvements in areas like undressing and making new sounds.

Harry is now 6 and still not talking. Making sounds yes, but nothing recognisable. I am convinced he understands simple commands like 'we're going in the car to get Ellie' or 'it's time for tea' or a particular favourite is the 'it's time for shower' where he often repeats a sound after I say 'shower' but it sounds nothing like 'shower'. I say it again though for him to repeat his sound and there we have a pattern of me repeating the right sound/word and Harry making the word into his own. So, to finally put to rest whether or not Harry is likely to ever command words, I have an appointment at Great Ormond Street for Speech Therapy at the end of January. Not sure what to expect, but it's got to be worth a try.

The children went back to school after having enjoyed a lovely time off for Christmas. Harry received some really lovely cards from the Reindeer that hung over his bed as they arrived and they snuck in a lovely present too! Our extensive list of 'Thank You's' has to include our Kate who sent Fairy Cards, Manicure Set, Lip Balms, socks, Magnetics to Ellie and Space Blanket, Chewy Tube, Glo-stars and a gorgeous spinning set to Harry. The Reindeer must have been eavesdropping too in working out the Bratz accessories and the JoJo CD for our Ellie! From the Post Pals Team came 3 figurines and a super microphone too. Helen sent a Tigger which is now on Harry's wheelchair. To Erica from USA, winter wishes from a very cuddly looking penguin ;-) If I have forgotten anyone, it is not intentional.

So 2008 is now safely here with the unpredictable weather in the form of more floods! Sometimes I think I'd rather swap all the water for a bit of snow, but then I remember the treacherous roads just being even more unsafe with the black and dirty snow, so maybe we're better off in wellies!! Plus it's kinder on the heating bills! We are desperately looking forward to spring with the promise of warmer weather and lighter evenings and taking the dogs for walks over the fields without bringing all the mud from the roads into the house. It seems to be a while since we had picnic weather and were able to watch the corn in the fields sway in the gentle wind... alas for now, we have more rain...

Here’s hoping you all stay safe through this extended downpour and avoid the floods. Repeated thanks for all the love and care you put into the joys of Christmas for Harry!!

Update 2nd December 2007

November saw the last of the peace before the pre-Christmas rat race and we've tried to rest after the long awaited and delayed finish of Harry's new bedroom. The builder has long since lost heart although a fair few bits are incomplete but complete enough for Harry to 'move in' which he has eagerly.

In my 17 years in England I have for the first time ever upheld our family tradition of Christmas baking and decorating the first weekend of December ;-) helped along by the visit of my Mum to show the children how we do things from our home. So, I write this with full Christmas biscuit belly with a tad of nougat rolled in marzipan all decorated nicely and the house smelling of orange pomanders we finished just after tea. This year, Christmas will be like it should be for me ;-)

Our Fairy has been in for a body MOT and our thoughts are with her now we know what that entails! Poor Fairy!! We think of you and send you fairy wishes! Thanks also go to Sami for her lovely card and bits.

We are going to the German Christmas Market for the children to go on the merry-go-round which Harry particularly loves. We normally have to prize him off the thing!! All the lights are so lovely too.

Harry went to clinic to see the specialist and we have to fine tune his diet even more now. His cholesterol is too high and immediate adjustments of food have to be made. Also, we are taking the brave step to get off the last of his epilepsy medicine, which so far is going well. Halfway to NIL, still nothing to report in the seizures.  

He is doing really well with his riding and they say that he'll soon be able to ride with no walker by his side!! His balance is extremely good on horseback and he loves the movement!

We wish everyone a stress free December (haha) as well as best wishes for a lovely Christmas! xx

Update 9th November 2007

October brought half term and Halloween, colder weather set in too so out came all the winter gear and the swimsuits and shorts were put away. The autumn has been particularly colourful this time with lots of leaves to kick and conkers to play with.

Our fairy of many names had kindly allowed us to join in with her birthday celebration and we were very proud to meet with her to present her with a birthday cake! We sang 'Happy Birthday' too and I'm quite sure after that she was happy to let us go again as we're not the most melodious or in tune of people!! We felt so very privileged in being able, just for once, to give her a little pleasure back after the many countless pleasures she gives to us.

We had some fab cards for Halloween and some scary bits too!! Our round of thanks also includes Nicole D and Mum for sending Harry a little toy, a card for Ellie and letter for Harry.

Harry's extension is nearly complete now. He has moved in, but the builder is not quite done and keeps nipping back for one or two things. Having Harry downstairs is just fantastic and he loves his new bigger room too ;-)

Update 30th September 2007

September saw the end of the summer holidays (if we can call it 'summer'!!) and the going back to school. Harry went happily, although I'm quite sure he'd forgotten what it was all about! He was soon back in the routine though!! This term sees horse riding again which Harry loves and also a weekly swim in our public pool. Ellie has also gone back to school but she has made the move from primary to high school and a grammar school at that! It is a big change for her with lots of homework every day, something we didn’t know from primary school at all! It has been hard, and to some extent still is hard for Ellie to get used to, but I think we're getting there now.

Social Services have had their meeting to review the decision to reduce our respite by roughly 2/3's and they've decided to postpone the decision. Now they want Health to observe Harry, which in principle I agree to, HOWEVER if they are going to observe Harry, then they can do it properly and come for the WHOLE day!! Instead of the hour long visit we normally receive, where they spend half the time drinking a brew!! So, I've insisted they send someone willing to try what Harry lives every day - and guess what?! Not heard back yet!!

I will keep you posted so you too can give your local Social Services HELL if you need to! They want to remember we'd ALL much rather have normal kids with NO health issues, delays and other struggles, so chances are we don’t ask for things we don’t need!

Our round of thanks goes this time for a most beautiful windmill and some beady named cards. The mill is in one of the post outside and looks lovely and the cards are on the bookcase for Harry to see. Not one feedback would be complete without a mention to 'you know who' - fairy of thousand names!! Every time she flutters her fairy wings she spreads a little happiness and we are honoured to have her in our lives. With that also very pleased indeed that our fairy has allowed us to visit her for her birthday - we can’t wait!! We intend to sing her a birthday song but afterwards I shouldn’t wonder if she'd be glad to see the back of our completely tone-deaf ensemble!!

Update 1st September 2007

Amidst extension works, daytrips and yet more rain, we've made the most of the summer holidays which are now drawing to an end. We saw the busy humdrum of Chester Zoo and got special passes for the children at Alton Towers to Ellie's delight and Harry particularly loved the tractor ride!

Ellie goes up to high school in September and her bag is packed with new stuff for school. Harry is back too with a new teacher but the same group of buddies.

We battle on to keep our respite unchanged against the wishes of Social Services and should have an outcome soon.

Imogen, Nyla, Robert and Claire have made Harry some really fab cards!! Thank you very much!! Our usual round of thanks goes to our Fairy of many Names, who is in our thoughts at the moment as things have been a bit rough. We have arranged to meet shortly, in the week of her birthday, to cheer her up a bit like she always does for us ;-)

Kind thoughts to all until next time xx

Update 4th August 2007

July saw the end of the school year for both Harry and Ellie - sports days for both the children were re-scheduled several times due to the weather and in the end, none of them took place.

We had a leaving service for Ellie who is going to grammar school in September - a tearful goodbye to all her friends! Harry had the prize giving where merits and certificates were given to all.

Whilst Friday 13th is an unlucky day for some - for us it was a truly remarkable day as Harry for the first time EVER spoke 'Here I am!' in response to the registration song they do every day at school. I have always been fairly positive he will speak and I am certain he understands our words to him so this has given me the extra oomph to never give up trying! We are due to see the neurologist next week and I will ask him to refer us to Great Ormond Street as I've come across a Speech Therapy for Harry's syndrome.

The summer holidays are upon us now with lazy mornings and chilled days. Lovely! Ellie is attending an out of school programme that gives days out and things to do, and for Harry we also have days out.

Social Services are forcing our respite to change rather drastically from the well working Direct Payment system to part DP and part Family Link. This is an unwelcome change as well as reduction of our help, so I've started another line of appeal and complaints. It amazes me that those to know of the least impact of a disability have the greatest say. One thing I've learnt so far though is that we know best - and they find this hard to argue with once confronted with appeal procedure! Just a shame it has to go that far and we have to shout to be heard!

We finally are to have Harry's adaptations to a more Harry friendly bedroom and bathroom, only been a nearly 4 year wait, so this is our last week without builders before the upheaval starts! We should be straight just before Christmas...

Again a thought to all those more affected by the immense downpours than ourselves, as well as the usual round of thank you's goes to our Fairy of Many Names, to Helen for sending two really good CD's of music and to Karen for sending things to 'chase Mum with'!! We hope you've settled in well in your new abode Karen!

Until next time - Happy Summer!!

Update 2nd July 2007

June saw Harry turning 6 years old which he did in style in the Portuguese Hotel's swimming pool where we enjoyed a week’s respite. For this occasion our list of thanks as always goes to the Birthday Fairy who issued Harry with some bubbly ;-) and bits to keep warm with! Harry also received some birthday cards, a super smart racing car and some cool fly glasses! Many thanks to all!

During June we've gone from one kind of extreme weather to another - sunbathing to floods... Last week of June saw many parts of England under far too much water for comfort and our thoughts are with the ones not so fortunate to be on dry land. We got cut off from the outside world for a brief time and had to rescue Harry from a broken down vehicle by wading through puddles and rain.

We now approach the last part of school term before the children drive us parents mad over the 6 week summer holiday. We’re hoping for better weather so we can all enjoy the barbeques and paddling pools outside!

Ellie is winding down from primary school and getting geared up for High School with new uniform etc. She still has the usual school play in July though and last day sees the Year 6's leave in style in a Limo for town to have a pizza! But hush! This is a secret ;-)

Hope you are all well and enjoying what summer is coming our way! xx

Update 4th June 2007

Harry has now had his 2nd anniversary of 'no seizures' which is awesome! I think few achieve this on the diet with the original diagnosis Harry had. On the latest kidney scan, we now have the result 'normal' which considering he is having 50 grams of fat per meal again is fantastic! We are continually warned to expect signs of obesity but Harry is so active from morning till bedtime, I wonder if this keeps the weight off. Thinking back only 4 years ago when Harry could hardly put one foot in front of the other and tonight he was legging it round the garden trying desperately to avoid me catching him as I wanted to cut his hair!! With the hot weather and going to Portugal soon, I thought I'd use a grade nothing so he won’t be so hot on his head but he was trying hard to avoid the clippers!!

We had belated birthday wishes to Eleanor from Elizabeth and Jack. We hadn't heard from you for ages and had been wondering if all well. We're glad to hear from you again and thank you kindly for remembering Ellie's 11th!!

We had a fab card from Lexie and Mum ;-) with some beautiful pictures stuck on a card! Many thanks!!

Many thanks also to Susanna and family from North Carolina - we like getting your postcards as they are so unusual!

And no month goes by without our Special Person of many names. We hope you've settled in well in your new home and that all went well with your body MOT ;-) this week in London!! Ellie has sent you mail but we send you special fairy hugs from here xxx

Update 1st May 2007

We all enjoyed having the Easter half term with the Easter bunny popping by and the lazy days. We also had a visit from our Nan in Denmark who hadn’t seen Harry for about 18 months and was amazed at the progress with him. We are approaching two years fit free this month on the 24th and I struggle to remember just how often Harry used to fit and how different he was. His progress is still awesome.

Our usual round of thanks goes to our special Easter Fairy come birthday Fairy for Ellie who also turned 11 this month. She is an amazing person, so full of spot on gifts and beautiful cards that line our shelves and window sills! She needs no further mention as she most definitely knows who I mean! We also had a fab easter egg chick chime, card and some lollies from our Helen ;-) and some sweeties and an easter card from all you guys at Post Pals - kind thanks all round.

Harry has twice this month been 'Pupil of the Week' due to hard work and achieving his targets!! Well done Harry!!

Until the next update - enjoy the good weather! Hope it's here for keeps!

Update 31st March 2007

Harry is doing really well - as we exit from our winter warm home to the sunny afternoons outside in our village, many people we haven’t seen much of since last summer, stop us in the street absolutely amazed at the apparent progress in Harry. Speech is the most obvious area of delay although he makes himself very well understood! Although school insists Harry is well able to lift spoon from dish and feed himself, this is a skill Harry has chosen to leave well imbedded at school - why not, when I have MUM?!! But oh no – now mum knows and has gone on strike and I have to do it myself!! Harry continues to listen well and understands simple commands like 'going to car or shower' or even 'it's time for dinner'.  This is a pleasing reward for us, working and loving Harry and wishing him abilities the specialists once said impossible - but the nicest of all, is how happy Harry always is! And if he is happy, so are we...

Helen sent Harry a tambourine (Mum is thrilled... lol) which has kept him in the musical frame of mind along with his musical keyboard. He really enjoys this, along with a musical drum and at times it looks like he's dancing! Movement and music really is something Harry enjoys along with the Teletubbies.

Our fairy of many titles continues, whilst moving from her lily pad to a new lily pad, to send love our way - you know who I mean!!

Oh, on a last celebratory note - Ellie has been accepted to a Girls Grammar School which I am so very proud of!

Wishing you all a lovely time at Easter.

Update 3rd March 2007

Harry continues to do really well both at school and at home. He enjoyed the February half term but I think he was ready to see his friends at school again at the end of the week! We spent most afternoons on playgrounds where Harry, with the abundance of his personality, made himself known to everyone! He seems to have grown another inch lately and if this growing continues, Harry will become a rather tall handsome young man!

We have had some beautiful Valentines Cards to everyone from 'You Know Who' ;-) as well as a card from Philadelphia US from our friend Julie. Also a fab bug card with lots of artwork which is in Harry's bedroom and he likes to sit and look at. Mrs Hibbert sent a little love in a parcel too and for all kind thoughts and gestures, as always, many thanks and our gratitude.

Update 8th February 2007

Harry has settled well into 2007 after our lovely Christmas break. We have enjoyed a not so cold January but the snow seems to be trying to catch up now ;-)

We have had some lovely letters and beautiful cards - Alan and Julie Barrett, our faithful Fairy/Elf/Reindeer/Valentine 'oh she of many faces and names' and I wonder if our Harry has not caught the eye of Helen who has sent a fab mobile and some super tapes with children’s rhymes in a super cassette box!!

Harry is making a new noise that mostly sounds like a long 'yeahhh!!' and when you say it back, he laughs.

Many thanks all round and hoping the winter isn't too hard for you all!

Update 5th January 2007

We had a super Christmas with nice enough weather to make it to the play park most days. Harry had a beautiful stocking from our Fairy come Reindeer. Harry had some lovely presents, many thanks all round.

Update 1st December 2006

We saw Dr Philips at end of November who was very impressed with Harry's progress indeed. We are going to carry on with the Ketogenic diet for at least another year which is fine by me. Can do it in my sleep now! Harry is growing nicely even though the diet is very hi-fat but Harry is still lovely and slim. He is quite tall for his age and very strong! Dr Philips on saying good-bye to us said Harry is a truly remarkable story.

Harry continues to do well at school - they are preparing for the Christmas play (7th) where Harry will be a snowflake. His school says he enjoys taking part and moving to the music. This year, he will also see the panto in our local theatre with school which I hope he will enjoy.

We have had a stair lift in our home for about 3 years now but Harry has recently mastered how to use the handrail to walk up - and in good old fashioned style bum it down again!! He finds this hilarious and we have to do this several times a day!!

Our Christmas decorations and lights are up, now just remains the rest of the preparations for the big day!

May we through PostPals wish everyone a merry christmas with lots of fun and laughter. We have enjoyed being with you all this past year - and at harder times have relied on your thoughts of us. I know our little Haz has touched the lives of some of you but I can assure you, you too have touched our lives and made us stronger.

As Ellie many a time has said - Harry was put with us because we're strong enough to make his life good but thank you to everyone 'out there' who helps us getting there. Best wishes to everyone for Christmas and 2007! xx

Update 1st November 2006

We've had a lovely half term in October after settling back into the school routine. Harry continues to do well.

Ellie is busy preparing for entry exam for all girls Grammar School in December and is working very hard.

We have had the usual post from our special friend Kate Dee and some good Halloween cards as well!! Thank you to Julie also!!

Harry has begun swimming with a swim ring so he wouldn't keep going under in the little pool, and he's developing a kind of Mermaid style swim.

Update 8th October 2006

Harry has had a busy month in September with going back to school. He continues to do really well but the best news was when his reading from the last EEG showed NO EPILEPSY at all!!! This is news I never dared expect and needless to say, I was in tears when reading the letter over and over. Part of me has always known we could beat the first prognosis Harry was ever given and I am so proud to say that we have. Instead of being a child with no comprehension, no mobility or neck control, Harry is as mobile as a live wire, just with a lot of brain damage and delay. I wouldn't swap for all the tea in China though!

We have had a lot more mail this month - thank you all round! Julie has sent Ellie some fabulous body jewels and a super Tweenies card which Harry loved and a few cards too. An aspiring artist has sent two drawings of beautiful landscape settings that now enhance our fridge, so thank you to the secret sender. We have had mail from Philadelphia and California too - many thanks! But best of all - we had a wonderful opportunity to meet with our Fairy / Reindeer / Easter Bunny / Santa's Helper and very dear friend, Kate Dee. She has touched our lives more than once, and I am proud to have her in our lives! Meeting with her was something really special and I hope we'll do it again. Big hug Kate!!

As a very last minute, we decided to have a weeks respite in Portugal again as our more homely respite arrangements are undergoing some changes. So, to re-charge a bit, we went there for a week and have come home feeling 100% better and browner than ever! ;-) Until next time - take care xxx

Update 30th August 2006

Harry continues to do really well! We have had a very laid back and relaxed summer, Harry has enjoyed playing which is a new experience for him and learning what toys can do. He has also begun twirling round and round till he's quite dizzy!! We have had a lovely bathtime light up set of bubbles, a super little beachball and cards from Kate, Katie and Nicky - thanks all round! We have also arranged to meet with our Fairy in a couple of weeks which will be fantastic! Ellie is really excited as this particular Fairy also has special links with Santa! ;-)

On a different update - I have met THAT special someone I've been promised really does exist - and he has taken myself with 'package' all in his stride. I shouldn't be too surprised if the forwarding address may have to be adjusted as there's every prospect of joining households!! So, although the summer 'got up and left' for rainy days - we have had a really nice summer all round - just with a bit less suntan!!

Update 2nd August 2006

The Summer Holidays are now here and we're adjusting to 'laid back late starts' days... Heaven!

At the end of Term, Harry attended a School Presentation where he was awarded the Head Teachers Award for 'Most Remarkable Progress'! Ellie and I attended and were SO very proud of not only Harry but also the achievements of the Staff.

It has been quiet from the Post Pals side but then everybody would be making the most of the lovely summer days! Except our faithful Elf who has spent time in hospital, a little under the weather - and we send her warm thoughts and best wishes!

Harry still enjoys his special diet although there is talk to wean him off very slowly - this being due to possible kidney damage but also that Harry is STILL the only child in The Midlands who has 100% seizure control. The hope is, once off diet, he will remain seizure free. It is now evident that Harry IS learning and his general delay, whilst still there, is lessening. We attend a special needs swim lesson once a week locally, and Harry has in 4 weeks progressed to moving freely in the water with armbands, to most insistently taking the armbands off! He keeps going under but up straight away and the instructor assures me, this is exactly what normal 5 yr olds do! So, another notch on the Milestone Stick!!!

Hoping we get lots more sunshine hours to be enjoyed all round, till next update!!

Update 6th July 2006

Harry is still fit free although there is an issue with possible kidney damage due to insufficient diet. This is a calculated risk I have to take though until the specialist no longer sees it as safe. Harry has now been fit free for 13 1/2 months and he is achieving and learning. His urine acids are raised, have been for more than 6 months, which is a kidney concern so docs arolds the midst of deciding if we have to slowly introduce normal food. This process would most likely take up to a year though.

Harry celebrated his 5th birthday in June - thanks all round. He had some wonderful cards from Post Pal followers and 'to become friends of our Family' but Emily, Becky Butlin, Kate Dee, Elizabeth, Julie Barrett and Post Pals deserve a special thank you!! You know why!!

Harry took part in Sports Day at School where Ellie and I watched proudly as he won the Flat Race!!! Once he got the idea and the hang of it - there was NO stopping him! Even the red banner at the end!! Considering the difficulties our children have with suthough.Harryuch praise must go to the dedication of all the teachers and staff at Harry’s school. Harry has gone from strength to strength there.

The support we as a family havButlinived through PostPals is second to none! I am honoured and touched that we inspire families and children, including school children, to write to us and include us in their good wishes. This support is invaluable! Wishing everyone a happy summer - not too hot but not to wet either!!

Update 31st May 2006

Harry has now been on the Keto Diet for 1 year with no seizures!!! He received a box full of balloons (with no sender???) but I have my suspicions!!!! I wonder if the Elf transporter didn't bring them our way!! The Post Pals Team made a fab cardPostPals the day - many thanks!! We also had some pressies from Elizabeth which we have put up for Harry's 5th birthday 13th June.

Progress is still marked with Harry - little things like he'll eat by himself at school but not for Mum ;-) Harry has had his first school report and although the tasks set are simple Keto still represent milestones for the boy who wasn't even supposed to hold his own head upright or walk.

We're attending another clinic this week and I already know the dieticians would be prepared to take him off the diet now. I have thought long and hard about this one and don't think I'm ready for that step quite yet. He will have to come off in another year max they say but I keep thinking 'don't fix what aint broken' and 'leave the lad alone!’ In truth, I think I'm scared to 'be normal' in case the seizures come back. It's all trial and error with these things but I'd rather not test on Harry! But then, I'm Mum!! Harry, until recently, wore special needs shoes to make him walk flat on his dieticiansad of tip-toe walking as he did. We were assessed again only 6-8 weeks ago and told, no need for special shoes anymore. Whilst this is fantastic news, the normality of it is scary and I seem to cling to the diet in the same fashion.

Toaintse not mentioned but certainly not forgotten - thank you for thinking of Harry xxxxxxxxxxxxxxx

Update 1st May 2006

Harry is coming up for his milestone 12 month with NO SEIZURES this May! 24th May is the actual day! He has grown and traveled far since the first keto meal! The progress with Harry has been un-imaginable considering the prognosis and the diet now offers Harry better prospect. In April we had an early break to Portugal where Harry for the first time ever actually enjoyed the sand and sea! Last time we trfashion.Toe screamed non stop. This time, we couldn't get him out!

Special thanks to our Elf xxxxxxxxxxxxxxxUpdate was it Ellie's birthday but also the Easter visit was remembered! It always amazes me how many different 'hats' our Elf can wear! Also Sue sent some lovely thiketofor Easter - thank you. Elizabeth and Jaun-imaginablemention too and so do all the other caring folk! Thank you all round.

Update 30th March 2006

Harry continues to do really well – school reported he has signed 'thank you' for the first time and I have seen him react when I called his name! That completely stumped me!!

On the recent teacher strike day, Harry stayed at home with me whilst Ellie had to go to school. As he so loves being outdoors, I decided to try to wash the car and also clean inside. Harry was really enjoying walking on the gravel, looking at the stones, plants, bench and other stuff we have outside but his delight was complete round.Updateket came out!! Where all the puddles were, so was Harry!! Splashing with his hands and the water went in all directions!! The car is marginally cleaner now...

Ellie's best friend, Sarah, is now a nearly permanent part of our family. When PalMail arrives, the girls take it in turn to open and show Harry. This can quite happily take the rest of the afternoon even if that means homework isn't done! All the mail goes on the back of a door till it's completely full! Julie sent a wonderful kit to make a mother's day card which turned into making 3 lots and a whole saturday! Ellie has had a fantastic notebook from Mr and Mrs Buiskool, and in that goes all girlie secrets! And not to forget our Family Fairy - thank you Kate! :-)

Update 28th February 2006

Harry is settling PalMail well at his new school and he is doing really well. He is mastering new skills and enjoying the more grown-up and independent way of school life. He is still fit free and enjoying his keto diet.

Harry has found the pleasure in hugs - squeezable hugs I should say! He initiates hugs and cuddles, and even comes looking fsaturdayf he wants one! He has been a bit forceful with his eBuiskool causing Ellie and I to have a few bald patches!! We are gently showing him cuddles can be nice too without ripping folk's hair out!!!

We have had some really nice cards this month - lots of artwork and some really lovely wording too. Many thanks to the guilty parties!

Update 31st January 2006

Harry began 'big school' this term anketos settled really well. His day is slightly longer now and he is being worked harder, or perhaps the pace is just a bit faster? He has made some new friends and met a few who left the other school earlier than Harry. He has been practicing eating without help and holding his own cup. We now have fewer messy jumpers sent home every day and I’m wondering if he's cracked it! 

A few thank-you's to include are the 'frosty' Wood's of Darwen, Mona from Virginia USA, Rhionna from Denver USA, but particularly to Ureshino Junior High School in Japan where a whole class sent Harry a card each!!!

Update 30th December 2005

Harry had a rough start to the Christmas build up with the usual array of tummy bugs going spare. However the week before Christmas, he had found his appetite again and began to enjoy good health. He continues to have excellent seizure control (NONE!!) on the diet and Harry has begun to have a bowl of snayou's the dining table where he is able to hDarwenmself to snacks when he waRhionnam. He is showing slight different choiUreshinog in many ways which is really lovely. He still loves being outside even if it's minus degrees!

Our dedicated Elf has surpassed herself this year - I now consider our family to consist of my two children, our pet dog, our Elf and I guess myself!! Since being involved with Post Pals, the love and care that makes this project possible is far beyond what I can understand. However the difference Post Pals makes in our lives, every person for different reasons, is beyond my words.

We have had beautiful letters from a school in Japan, lovely cards and calendars too. Thank you ALL for wanting to make Harry's and our Christmas so extra special. God bless.

Update 28th November 2005

We attended the follow-up at the Keto clinic where the specialist now says Harry is responding to the Keto diet 100%. Harry remains seizure free from 24th June 2005.

Harry is still more focused, with improved balance, co-ordination and progressive development. He even walks flat on his feet now where as he used to tip-toe causing him to have special shoes. Perhaps Harry too can wear normal shoes??

Harry and Mum did an appearance on ITV coordinated by Birth Defect Charity 'Newlife' about how little pbless.Updateold when they learn their child has a special need. Ketoaps you saw us? Many who did have told us how good Harry looks noKetot was a super day in November, not cold, and Harry went outside for a walk! That in itself is great for Harry and was once never expected to happen!

Taking this opportunity to wish all who read about and follow Harry's battles and victories, a very lovely Christmas! Many thanks for your support in the year - we'd be lost without you.

Update 30th October 2005

Some FAB HNewlifen cards with SO much care gone into!! Many thanks to guilty parties!! Karen's card is a real treat! Kids loved bugs - can't say I was as thrilled!!

Nicky has provided lots of fun with super ball and lovely card - Ellie loved your jokes sent via e-mail too! We've had some good bugs crawl through our letterbox - I wonder if I shall have to put a grid over it in future to prevent an infestation!!!

Harry had his follow-up appointment with specialist and dietician. He is STILL seizure free (from 24 June 2004) and like an oversized toddler! Doing all normal things to a 2 year old! His progress overall is fantastic, he has recently begun horse riding at school and with that his balance is very much improved. He has made his first proper little drawing using a PC - something new to Harry. He is using a couple of Makaton signs (snack, drink) and is very aimed in his actions.

We have got a new edition to our family, Toby, border terrier x, in the hope the two of them will bond and perdietician Harry communicate. At the moment, Toby 12 weeks old, equaloversizedbeing swirled round by the tail to Harry's delight! Our opinionated 4 yr old mini Yorkshire Terrier with a serious attitude issue, is sitting close by with a look full of disgust that this can cause someone to squeal with delight!!

In mid September, we went to Portugal again for a respMakatonak. We all tanked up with (now faded...) suntanactions.Weh!! On an afternoon out with us all, Harry kept showing that he wanted the shandy someone was drinking. In the end I gave in and let him have a sip. He scrunched his face up to look 102 but loved it!! Kept banging the table and showing the sign for 'drink'!!

And he says 'Mom'... Definitely!

Update 15th August 2005

Harry has been fit free (of ALL seizures) since 24th June 2005! It's like someone 'switched' Harry on! Whether it's the Ketogenic Diet, his medication, or perhaps even the eye corrective surgery of May 05 - well, who knows. All I know is that I have my boy back! What all this does to diagnosis and prognosis is far too early to say. Harry is still greatly delayed, no communication changes and 'special needs'.

On a different note - Many thanks to Sue C and friend for their lovely bits in the mail! The Magic Water Colouring Book went down a real treat!! A mystery 'Series of unfortunate Events' rucksack turned up last week to Ellie's delight! She is KetogenicOOLEST back packer in the area!!

We have had some lovely cards from Illionois - USA, Isle of Sky, and from Israel came a super beach ball! Closer to home too! Many thanks all round! All the cards are lining our fridge although they frequently fall off!! I have had to get some more fridge magnets to do the job!

We are trying to enjoy what little summer it seems we have. On the good days Harry is chasing the balls in the garden and Ellie is jumping on the trampoline.

Update 22nd June 2005

Harry turned 4 years old June 13th and goodness me - we were inundated!!! Again our Fairy was superb with toys aIllionois pyjamas! Sue Cuin has made Harry's bath time extra fun as well as sending jingles, Lorna Rogers sent LOADS of stickers, the Butler Family sent an ace spinning top and Post Pals sent a 'keto friendly cake'.... and Kat some super action rhyme CD's that we're all bobbing along to! Harry also got a colour lamp which he loves!! Thank you for all the time put into Harry's lovely handtrampoline.Updateenough to keep forever!

Thank you to everyone for wanting to make Harry's day so special! xx

Harry has now recovered from his eye operation in MayCuin the day we had that done; he also began a new medication in the hope of reducing his seizures further. I had to choose between 2 types of drugs - a quick wean on and oketohat had to be introduced slowly. I saw this choice mCD'slike 'the devil and the deep blue sea'.. I went for the quick wean on as we'd know sooner but I can honestly say I haven't held my breath! For the 39 months Harry has been on endless medicine and any combination imaginable, absolutely nothing has made any difference until the Ketogenic Diet in December '04.

Harry has now been on this new drug about 4 weeks and the last bad fit was 8 days AGO!!! I have finally met my son. He laughs; he's cheeky, mardy, naughty and crafty!! And I love it!!!! He walks with a purpose and his actions are aimed. He finally accepted drinking out of a cup instead of bottle and he is again taking an interest in self feeding. He listens to what he's being told - when I say he's naughty well, he just starts laughing!

Ellie and I have always thought Harry was given to us to learKetogenicome better people. We are both so very proud of Harry and his achievements!! xx

Update 18th June 2005

Harry is now diagnosed Lennox Gastaut Syndrome and not West amardynger. West is a time limited condition affecting infancy hence why the change of diagnosis.

Update 28th May 2005

We enjoyed a break in Portugal early May taking with us the children's Godmother to help out. Whilst Harry enjoyed respite with his PA, we lounged by the pool and dipped in the cool water when needed. Harry joined us every day for several hours to swim and splash in the water. It was lovely to have a little break where Harry waxxUpdateooked after giving Ellie and me the chanLennoxsGastautrlie' time!! Not to mention a decent tan!!! The day we left the rain started and it rained for several days with temperatures dipping to what we had - so perfect timing!!

Harry has now had his eye operation to fix in position his straying / drifting eye. Whilst writing this on day 4 post OP, Harry has been walking round the garden WITHOUT a hat (!!!!!!!), his balance is much better and he appears much more aimed when reaching and picking up things! We have follow-up appt in 10 days time at which point we can say if OP worked but early signs are good.

We were sat in friends garden on day 2 post OP when Harry suddenly pulled my sleeve quite insistently, saying a long 'Muuum'. There was no doubt what he wanted and needless to say, we were all near tears!!

Harry has again had some lovely cards - Emma from Wirral deserves a mention for a beautifully simple card and Sue is guilty, again and again (!) for sending lovely hugs via loveable characters to much delight for Ellie. And the best Elf. apptlso had a card from New York from the 'Glitter Monster' - Guess Who!! Many thanks to those not mentioned but therefore NOT ignored nor forgotten!!

Update 25th March 2005

Harry diet is known to cause up's and down's, whilst he is still accepting to eat the food - his seizures have been getting very intensive causing Harry to be black and blue. Consequently, Harry is now back on medication. However on a more cheerful note, the first EEG Harry's had done since commencing this diet is showing less activity and more 'normal' pattern which basically means, the brain damage is being limited.

On a behavioural note, Harry is now taking notice of what he is being told - he listens carefully with good eye contact and pays attention! His actions generally are more aimed than before so whilst I'm not thrilled in being back on medication, perhaps it's not so bad.

Update 5th March 2005

Harry has had some fantastic artwork sent recently!! Imagination, time and love is so obviously, key words for efforts sent from Sam, who's 5!, and also from Yvonne Hindes. These cards deserve a mention here as well!

Harry has this half term had his first respite for 6 days. Needless to say, Mum and sister took the first plane 'out of here' to get a much needed break - we waited 3 years for this!! Harry coped beautifully, his diet had really good figures (measuring ketones and blood sugars twice daily) and Harry is generally experiencing a much reduced rate of seizures. We attended Harry's first keto-clinic before the half term where the neurologist is well impressed!

I have learnt the diet and can now do it sleeping, as well as mastering the art of bulk cooking!! Harry still accepts this new very difficult diet and we're seeing good results!

On a serious note, Harry's brain damage from 3 yrs of uncontrolled seizures is incomprehensible. He is in a 4-5 yr old boy’s body with a development of perhaps 1 yr. No speech or any other form of communication - only laughs and moans.

Harry is 95% of the time a happy lad. But I don't think he recognized me, Mum, when we returned from our hols. I don't feel I should be upset about this though and I handle this in a 'matter of fact' kind of way. It has hi-lighted the fact that all Harry needs is love, love and more love with an ounce of patience thrown in for good measure! And it's made me look more closely at the fact that one day, Harry may well be best off spending his days in a place where there are like-minded instead of him always standing out. But for now, he stays at home!!! Even if he doesn't know ME - I love him to pieces and wouldn't be without him for the world!!!!! ;-)

Update 20th January 2005

We have had some lovely cards and letters - Diana from US but a special mention to Santana, Rachel, Ronnie and Rebecca for their fab artwork!!! It seems Harry has touched the hearts of two Japanese schoolgirls who sent fantastic mail over Christmas!

We would like to thank everybody who sent wishes via e-mail too!! If only I could have 2x24 hours per day I would love to reply to every one. The ones who don't already have received 'a note from Harry' please accept our thanks this way.

The New Year started well for Harry on his new diet! He is walking to and from the car; in and out of school and during school he's unstoppable! It's such a gift as Harry's Mom to be allowed to see the real Harry - tantrums and all!! I've never seen Harry being naughty and he's catching up on lost time!!

However, Harry at the moment is victim with everybody else of bugs and viruses and he's a bit under the weather.

Update 31st December 2004

We have had some beautiful cards for Christmas - Emily's card was particularly lovely! The reindeers sent Ellie and Harry a present EACH which was fantastic!! We also had a brilliant bubble machine that Harry absolutely loves!! We had another few things that 'Santa' sent - many thanks to guilty parties!!!

Being part of Post Pals in the build-up to Christmas, reminded me what the festive season is all about as well as combining the 'post a smile on a sick child's face' Post Pals Statement. We have on occasion been touched beyond words. Knowing that folk go to this much trouble is warming and reminds me that the world generally is only as bad as you make it. Judging by those involved in PP and the people who come across its way are proof yet again, that the people around us are more thoughtful than ourselves.

Harry is getting used to his new diet and taking to it very well. We have much fewer seizures and Harry is generally happier. Improvements on vision and walking are still great. Harry is vocalising using different or new tones, perhaps speech may follow?

Update 22nd December 2004

Harry is doing well on this diet. His walking is 100% improved! He tolerates this diet very well considering how fatty it is. He is still having headdrops but the more severe seizures are down to less than 10 since we started - I think we're on week 5 or 6 now! Before then, we'd have that per week! It looks like we can put this one down to having a result!!! Which means he can come off his medication!!!

Update 12th December 2004

Harry has started the Ketogenic Diet late Nov /04. He did this in hospital where even the Post Pal mail managed to find us!! We're on week 3 (or so) of the diet which can replace meds and can mean fit-free. Harry's seizures are reduced, not gone, and generally he seems more alert, better eye contact, more vocalisation and much improved walking. Our first Keto clinic is scheduled for Jan which will be an early indicator if we carry on. This diet is very strict and very time consuming but seems worth the effort.

Update December 2004

Harry is now home so please welcome him back by forwarding any mail to the above address!

Update November 2004

Harry is in hospital, to start the Keto diet; he is doing well and produced ketones by Wednesday which is quick and good.

Update October 2004

We are planning a Halloween party for Ellie, Harry and friends. This is Harry's first and he's going to be a pumpkin! Harry has settled in nicely after our holiday to Portugal and I think he's been glad to be back at school! We are exploring the option of dolphin therapy to help Harry with speech, gross motor, fine motor, concentration etc. Anyone fancy helping fundraising?

Also special thanks to Kate Dee - beyond words.

Update September 2004

Harry is doing ok, he was sent by a Poster a toy which projects images on the wall, which he loves, and has inspired his mum to make him a sensory room with things like bubble tubs and changing lights. I’ve already sent him my old disco ball (which puts different coloured blobs on the walls), if you’re stuck on ideas of something to send him maybe anything along those lines? Harry, Ellie (his sister) and Mum are off to Portugal soon to visit family; we hope they have a lovely time.

Update August 2004

I take Harry to Brainwave, they are sort of rehab for brain damaged children. I haven't long got back. In the past 10 months the most remarkable development for Harry is that he now chews. This is fundamental in early speech. Incidentally 3 or 4 independent people have suggested that Harry says 'Mummy' more like 'ummmy', 'hello' more like 'elllo' and 'yes' more like 'yah'. These have been consistent for 4-6 weeks but hearing them often I hadn't dare to believe. You know what it's like. It's about 28 degrees here, not much wind blowing and Ellie is in and out of the pool. Just had Harry in a shower - he's been a bit grumpy with the heat and not really wanting much to eat.

Congratulations Harry, all of us at Post Pals are very proud of your achievements.

Update July 2004

Since joining very recently, we have been inundated with stickers, craft kits, teddies, water balloons, colouring books, blanket, balloons, cards emails etc.

WE share and show Harry as much as possible and have all the things displayed everywhere!

Receiving all these items from thoughtful folk who want to be in our lives, means so more than we can ever express!

There is SO much LOVE in Post Pals it’s fantastically touching! Our lives are richer for sharing our sad times with you! Love Su

Update June 2004

Harry received lots of cards and presents for his birthday, including stickers, soft toys and lots more for his birthday, some people “even spent a long time making posh artwork”. They were very touched and pleased, and say a BIG thank you to you all.