C/O 39 Abbotsbury Road
Newton Abbot
Devon
TQ12 2NW
United Kingdom

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

Email Pal

Anna-Mae C's Parents/Guardians

Ann and Andrew

Anna-Mae C's Siblings

William, (11.11.94 Football, swimming)

Anna-Mae C's Interests

Reading short stories, swimming, dancing, horses and playing with her friend Tory.

Anna-Mae C's Favourite Colour

Red

Is Anna-Mae C able to read?

Yes

Is Anna-Mae C able to use hands?

Yes

Is Anna-Mae C visually/hearing impaired?

No

Does Anna-Mae C suffer from any developmental delay?

No

Favourite type of post?

Letters

Story written 2005 

Anna-Mae was diagnosed with CMT in December 1997. I think I had realised there was something wrong, but was living in total denial. After all Anna was almost two years old, and still couldn’t stand. We had the diagnoses one day, and she embarked on her treatment plan the following day. This was very hard for us all, but within a few months she could stand.

She spent the next five years having her legs put into plaster every month for a week, but this non invasive treatment seemed to work really well.

There were lots of highs and lows. We were told that she could go blind and deaf and be in a wheelchair full time, by her teens.

She has continence problems, which are on going, and this does leave her feeling inadequate.

Then in approx 2000, out of the blue and totally unexpectedly, we were called into hospital to see a Dr. that was coming down from Bristol to meet with us. At this meeting we were told that she had a second and totally unrelated disease called Cherubism. Neither Andrew nor I had ever heard of this condition. It was explained to us that the bones in Anna-Mae’s face, were being eaten by tumours. She has many benign tumours that will grow very aggressively, and may leave her beautiful face very disfigured. She had only cut 8 teeth, and they are all misplaced in her mouth. Some are upside down while others are back to front; she even has one to erupt up into her nose cavity. Andrew and I both struggle with this condition and still find it hard to come to terms with.

The problem is the two diseases are not compatible with each other. The CMT which is a form of muscular dystrophy means her balance is very poor, and she has many falls, but the Cherubism, dictates that her face must not be injured. This is because her bones are paper thin and very fragile, and the tumours run a risk of malignancy and/ or rapid and aggressive growth if they suffer trauma.

Anna-Mae is an inspiration to us all, with her zest for life and her courage. She openly tells the general public, that may be staring or making comments about her teeth, just what her conditions are, and invites them to ask her questions, making people aware and helping people to understand. She is a very popular little girl in the town, and very special to all that know her.

Update 6th May 2008

Anna-Mae has had another good month. She had a hospital appointment at Bristol where she saw a consultant she hasn't seen for a while and all went well. It was a very positive meeting and she is looking forward to seeing him again in July. He is going to see what he can do cosmetically for Anna-Mae's false teeth, as a couple of them have discoloured quite badly (turned black) and she is very aware of them.

She is going through a series of serial casting to both legs, at her own request, as she can't get her heals down when riding the horses. She had to have a break last week as she had a crop of blisters on both legs/feet, but she will be back inot plaster this week. It's better to get it down before the summer arrives.

We have contacted Over the Wall about a place at summer camp for Anna and she is keeping everything crossed in the hope she gets a place. She has also been saving really hard to go away on a weeks live in riding holiday and she is almost at her goal, so she is putting pressure on us on a daily basis to book her in.

She has had some lovely post this month including a postcard from Julie in Perrenpoth - we hope you had a great time! We had some beautiful hand made cards from Karen, Chloe, Tina and others (she has taken all her post into school, so i'm sorry but i'm writing from memory!) and a fab riding book from Kim. The book has been read over and over, so thank you very much. Thank you to everyone else that i've missed, your mail is much appreciated.

Update 3rd April 2008

Anna-Mae has had another great month. The sun is shinning and all is well on the western front. She has been on school holidays for the last two weeks and has another two to go. She has been having riding lessons and is coming on so very well. I’m absolutely convinced that the riding is helping strengthen her core muscles. She hasn't used her wheelchair once this holiday, although when we went to Castle Drogo for the Easter Egg hunt, she scrounged a lift back in the golf buggy. She said her legs were really tired, but we think she just fancied a ride in the unusual mode of transport, plus there was a hail storm and it was bitterly cold! We had to walk! Ugh!

Her cousin Lou finishes school today for her holiday and Anna is looking forward to spending time with her. They are both going for a riding lesson this eve at 7.30! Then on Sunday Anna has a sponsored swim for cancer research with a few members from her swimming squad.

On Monday we have to go up to Bristol to see a specialist that Anna hasn't seen for some years. She adores him and is so looking forward to seeing him, although it’s an apprehensive time for Andrew and I. At least we may get some serious retail therapy time!

Thank you to everyone who has written to Anna. She really enjoys reading her mail. Thanks to Kate Dee, the Easter Bunny card was so sweet. Jenn’s card was very jazzy with the stars all over it. Pauline would have had a reply yesterday, but after Anna wrote her letter, we realized there was no address to post it to! Also to dear Elizabeth and Jack, thank you for your card. Julie Barrett sent Anna-Mae some lovely lip gloss. She loves sitting in the car applying it in the vanity mirror... very grown up!

I would like to say a special thank you to Erin F's Grandparents. They have sent cards and messages to Charlie, Henry and William. Their words were very kind and I know Charlie and Henry especially appreciated the sentiments. It’s always nice to be acknowledged and appreciated!

Update 13th March 2008

Anna has had a lovely month. Her health is very good, and the hospital visits have been almost none, which makes such a difference to her spirit.

She continues to settle really well into school life. She has had a very large life changing episode over the last month, but it is of a personal nature, that could not be printed! She has coped extremely well with the massive hormone surge... but I haven’t!

Her riding is still the centre of life itself at the moment. Every moment of every day is filled with those girly thoughts of owning a pony. I keep telling her when my boat comes in! She had had a couple of private riding lessons and I was really impressed with her determination. She did struggle with getting her pony to move any faster than plod and this is when you can see how weak her legs are, so the next lesson she is riding the most beautiful pony called Little Blue, who jogs everywhere!

We have contacted Over the Wall project and are awaiting a form to apply for a place. She is really excited about the possibility of going and especially the fact that I can’t go with her! Bless her.

We flew over to N. Ireland on Saturday to have dinner with my brother and it was lovely. Anna loved telling everyone about the trip and the fact that she visited 3 different countries in 24 hours (Northern, Southern Ireland & UK) then we flew home on Sunday. 

Anna had valentine’s cards by the bucket load last month! I was sooooo jealous! Anna has also had a couple of lovely letters this month. She loves getting letters. We really appreciate the post that arrives. Thank you to everyone who takes time out to think of our kids. The difference you all make is unimaginable.

Update 31st January 2008

We were all struck down with that awful tonsillitis bug last week, and we were getting worried that Anna-Mae’s scheduled surgery would be cancelled. Amazingly, she made a miraculous recovery (I feel sure the angels had a hand this) and Anna had her operation last Tuesday and she coped with it amazingly. All went very well. She enjoyed having girly duvet days afterwards. The only downside is that she can’t go swimming until after all the stitches have gone. 

She has now found a best friend at school, thank goodness! This has been a very long time coming. She comes home everyday and tells me all the girly gossip. There are times I have to sit for hours listening. Bless her. She is so excited about it all. Today she arrived home to tell me she asked a boy out! Can you imagine the knots my tummy went into? I was very relieved when she told me he was thinking about it. It could have been a straight forward NO WAY! I wasn't prepared for that phase of her life... not for years to come. I think that just proves her confidence is growing.

I think these delicate years, for any parent of special children are the most worrying. We want them to develop in all aspects of their precious lives, but are really frightened by the actions and reactions of their peer groups. Our children are 'normal', but just have 'broken wings'. We want with all our hearts to protect them from any sort of hurt, emotional or physical, but we also realize we have to let them make risky moves, to enable them to grow.

Anna-Mae is now also into horses. She is having riding lessons and loves every minute of it. She was accepted at a local pony club, amazingly! They are brilliant with her and she is treated just like one of the girls. She arrives at the stables at 10 am and stays for 3 hours. They have to groom their ponies, tack up and hack or have a lesson. She has to muck out the stable and fill the hay net. It would be so easy for someone to take over and do her chores for her, but NO! She has to do it all. Sometimes the girls work in pairs, and if it’s her turn to carry the water bucket across the yard then so be it. She usually comes home with one very wet leg, but her self worth and sense of accomplishment is amazing. I love seeing her so happy and growing in every sense of the word.

Anna- Mae had a Christmas card on Tuesday from Nicole. I think it must have been lost in the post. Anna-Mae thought she was very early!

Update 6th January 2008

We are living away from home at the moment as Andrew had to have major surgery on 19^th December. He is unable to get home for the time being and we think it may be a couple of months before he does.

Even though we had an unsettled time, we as a family had a wonderful Christmas, and everyone was thoroughly spoiled. The elves were exceptionally busy this year! Many heartfelt thanks to them all, especially the naughty elf, that sent the very naughty chocolate fountain!! A huge (in every way) hit with all 6 of us!!

Wishing you, the Post Pals team and everyone who takes 5 minutes to write to our very special children, a very warm, healthy and prosperous 2008.

Update 2nd October 2007

Anna-Mae did exceptionally well at the swimming presentation evening. She won 7 large trophies, 7 small trophies and 3 gold medals. She looked beautiful and we all thoroughly enjoyed the evening.

Anna's mobility has deteriorated again and she is due to go into serial plasters next monday. The hospital suggested half term, but she hated the thought of it interfering with her holidays. At least she is pleased about it being in term time! School is going brilliantly. She absolutely loves it. The lady the school took on as her 1 2 1 had to leave again, which gutted Anna, but they have found a very nice lady to replace her.

We are going to York at half term, to visit the Jorvic Centre. We are all looking forward to that. It should be very interesting.

Thank you to everyone who has taken the time to send mail to Anna and Will. All mail is so gratefully received. There is a letter waiting for her today all the way from Orland Park, Il, USA.

PS. A very big and special thank you to the post pals team, for the beautiful box of chocolates. It was really appreciated.

Update 1st September 2007

Anna Mae remains totally into her swimming and continues to do really well. We have a presentation evening on September 15th and she eagerly waits to see if she has won anything.

We had a swimming gala at the beginning of our recent holiday, where Anna Mae took part in every race she was eligible for, and won in every one. The last race was a 4 x 25m individual medley and Anna Mae beat her personal best. She put her heart and soul into it and ended up hyper ventilating! Last week she put her name down for the long distance swimming gala and has put her name down for five races - the only thing is that they are all 8 lengths of the pool each. I joked to her swimming coach that we may need oxygen this time!! I take my hat off to her determination.

Unfortunately, Anna-Mae has had to give up dancing, because her legs and balance have deteriorated and it made it very difficult for her both emotionally and physically as she felt she was failing. She is now heavily into horses/ponies though and loves everything about them. Nanny recently bought her two new books, Mystic and the Midnight Ride and Blaze and the Dark Rider, which I think are part of a series of books.

We have had a great holiday this year spending 2 weeks in Brittany, where the weather wasn’t brilliant but we had a few sunny days. All the children were begging us not to look round any more forts! Then we went to Sennen Cove in Cornwall where the children spent 3 days in the sea! From there we went to a Jazz festival where we camped for 2 nights and as per most music festivals, it teemed down with rain, but a great time was had by all. From there it was off to Scotland, where the Edinburgh Tattoo had us all totally mesmerised. This week, we have Harvey, Anna Mae’s 12 month old cousin. Anna insisted on having Harvey in her room and it made me giggle when at 2 o’clock this morning I found all four of my children trying to shush a screaming baby and not wake us up! 

Anna Mae has had a difficult time this summer health wise as she has cut a tooth which is pushing its way through her nose. Her Doctor has said it’s best to leave it to come through a little bit further, if she can stand the pain which will make removing it easier. Otherwise it means digging down through the tumours and causing them trauma. We are waiting to see a specialist in Plymouth regarding her legs, but I think they are becoming painful as she is growing. We have taken delivery of her new wheelchair which is very grown up with racing wheels and a low back. She is now saving hard to buy herself a pair of wheelchair gloves as she keeps burning her hands on her wheels! 

Anna Mae is going to her new school next Wednesday and it just can’t come quick enough for her, she is so excited. We are going into town shortly, to get her school stationery. I'd better warn the bank manager!!

Thanks this month to Kate D and to Julie Barrett who sent me the Pinkie gift set. Thank you to Nicole D, I will be writing back shortly. Thank you also to Emilia, I loved reading your letter and will write back soon. I’ve had lots of lovely gifts this month, I especially love the beautiful teddy bear that was waiting for me when I got back from holiday, his name is Tefur which means "T" for teddy!

Hope you are well, thank you for everything.

Update 2nd July 2007

Anna-Mae spent a week at her new school in preparation for September. She really enjoyed her time there and was very sad when Friday came. She has made some new friends and now can’t wait for September to come. She looked so grown up in her new uniform.

She is waiting for a consultant’s appointment to see about her legs. They seem much weaker and more painful than they have been in a long time. I hope we can get her sorted before we go on holiday to Brittany in 3 weeks time.

Anna-Mae continues to do well, although her dancing has come to an abrupt halt, as her legs aren’t quite working as well as they have been. She has spent a month in casts to lengthen her tendons, which has been quite successful, but she still remains stiff and sore.

She has joined the Rookies life saving course and continues to flourish in the swimming department. She has entered herself into six races for next Saturday, but because she is 11 now, she has to do 50 metres. I did try telling her, but like most 11 year olds, she knows best!

Thank you for her post. Anna loved the cat poem and thank you for the dancing cat card. (Honorary cousin)

Update 12th May 2007

I (Anna Mae's Mum) have received a parcel in the post this morning from the Post Pal Team, a fabulous pot of iced coconut sweets. How wonderful!! I never receive anything nice... only ever bills! I feel very special! I know the rush the kids get now when the posty arrives. Even the postman made a comment!

Please accept or give my heartfelt thanks to the mystery parcel sender. It has made my week... let alone my day!!

Update 29th April 2007

We have some brilliant news! We all went along to the Langstone cliff hotel in Dawlish last Friday night for the Teignbridge Sports personality of the year awards. Anna-Mae looked beautiful in her baby blue dress, sparkly white cardigan and both legs in plaster!! Everyone was totally bowled away when Mark Tyler from ITV announced in reverse order who had won! Anna-Mae! Andrew and I both cried. She was so proud and rightly so!

Thank you to Post Pals for the beautiful lights for Anna-Mae’s bedroom. We are in the process of decorating her room at the moment and she is patiently waiting for them to be put up. Well, patient in Anna-Mae’s world!!

Update 10th March 2007

Anna has had a couple of letters and cards from Julie Barrett and Alan, with some yummy little pressies that Anna Mae treasures. She also had a delicious lollipop lip gloss and card. Kate Dee frequently sends Will a card and note, which he loves receiving.

I do feel that we should remove Charlie and Henry from the list now as they are almost men. Nearly 18!! Scary!! Thank you to everyone who has taken the time to write to them and send them gifts. They have been spoilt rotten and we all really appreciate people’s kindness.

Anna Mae has been nominated for sports person of the year for her achievements in swimming. She also passed the exam to get into her first choice of school.

Update 12th February 2007

Anna-Mae remains very well and blossoming at the moment. I am so proud to be her Mum. She really is such an inspiration to us all, with her positive outlook and attitude towards life. LONG MAY IT LAST!

Anna-Mae has been incredibly busy over the last few weeks. She was asked along a few of her friends from 'The Dance Mill' to dance for the opening of the X Factor show, which she did last night. It was all very exciting and she had the treat of having a photo shoot with Phillip McGee, an X factor finalist and Chenai, as well as Eaton Road. We took Tory along to support her best friend Anna. Tory thought Anna was the best dancer on stage! Bless... we could all do with best friends like Tory!

Thank you to everyone who sends Anna-Mae mail. She loves getting letters and replying to them... providing there is a forwarding address and time allowing. She really does try her best. Special thanks to Viks, she really spoilt Anna-Mae and Will. Thank you also for the delicious pressie included for Andrew and me too!! Anna-Mae also had a very special parcel from Jackie in Sandhurst (two Tracey Beaker CD's) and she listens to them every night at bedtime. I can hear her talking along to the cd's now. Children really amaze me at just how retentive their memories are. How I wish I could have remembered Shakespeare or Keats like that!

Update 3rd January 2007

Thank you to everyone! Anna-Mae had lots of wonderful cards from people this Christmas; she even had cards from Dasher, Dancer, Prancer and Blitzen, Comit and Cupid and Donner and Vixen. Can you ever imagine the excitement? And Rudolph sent the most amazing card with a flashing nose! It must have been a magical card as his light is becoming very weak now Christmas is over. 

A secret elf sent Anna-Mae the most wonderful gifts. Her most favorite present of all she received was a lifelike chimp that asks for cuddles. I think that she needed that, and has now got a new purpose in life... to cuddle her chimp and boss us all about, trying to teach me parenting skills! Apparently my way is totally wrong!!

Anna-Mae has taken to reading lots and lots of books in her bed. She is working her way through an Edith Blighton compendium at the moment, as well as Jiggy McCue! She is also growing up and her girlie ways are forming, such as make-up, bath bombs and face packs. She loves her toe nails to be painted etc.

We had quite a stormy year last year with one thing and another, the death of my mother, good friendships separating, etc. This all knocked Anna-Mae’s confidence and so her abilities, but she is a fighter and she is now fighting back. Anna-Mae has seemed a bit better in herself over the last week or so, as have we all. We all love and miss granny like mad, but we are talking about her daily and in fun. It’s good to see her old self back, and it’s good she has dealt with life’s knocks and moved forwards in the right direction. I feel sure 2007 is going to be a great year for us all. HAPPY NEW YEAR TO YOU ALL!!

Update 1st December 2006

We as a family have had a very bad time this Autumn with my mums "Grannies" cancer, and her death on the twin’s birthday. It has hit us all hard, and we are all reacting in different ways. Anna-Mae has had everything wrong with her and aches and pains daily. I think she is feeling sad and empty and that she is having difficulty putting her feelings into words.

On a brighter note, she has had her new teeth fitted and she has the most wonderful cheeky smile! She is so proud of her new look! Anna-Mae and Will have taken up making cards. Anna-Mae had the most wonderful selection of cards from the card Rakers forum, that she decided she wanted to have a go. It’s lovely that they have found something they can sit and do together on equal terms!

Have a wonderful Christmas!

Update 30th August 2006

Anna-Mae keeps getting regular post, postcards, small packets etc. Even the postman knows when the mail is from Post Pals! He was very interested to hear all about it and she feels so excited when he arrives! We all crowd around her to see her open her mail. Sometimes she rips open her mail, other times she peels it open slowly and when everyone’s excitement spills over she then decides to take the package to the privacy of her bedroom, leaving us all waiting. How terrible is that! William is especially driven mad, and can get quite bolshy! She knows how to play the boys up!!

Anna-Mae has had a great summer. The time has flown by. I can’t believe that the children are all back to school next week… I don’t feel ready. Her health has been very good and everything is very upbeat. It’s great when life chugs along like that.

Her specialist is attempting to make her a special set of teeth. They will not be removable this time. They have to cast them in 24 carat gold, so the metal is soft enough to move and bend with the growing tumours. She is so excited at the thought of them. Fingers crossed.

Sleepwalking has become an issue over the last couple of weeks. She frightens me half to death as she wanders around the house, and we do have the most confusing conversations! I have never dealt with sleepwalking so this is all a little weird to me.

Take care everyone and heartfelt thanks for all the joy and laughter the project brings into our house.

Update 8th May 2006

Anna-Mae has been awarded a place at the school we wanted her to go to as a day girl from September 07. We were totally amazed that the place was granted… just like that. We compiled a full and comprehensive document about Anna-Mae’s conditions and all of her consultants/ Dr's and anyone she has contact with wrote letters confirming the problems that she will face. We were told that it was going to be a long hard battle, but, Education was so good and understanding, and they confirmed that she can go. Hooray!!!! Anna-Mae is so over the moon, as we all are. Any parent that faces the same dilemma please don’t worry too much, as it's not as bad as you may think (like i did, many sleepless nights and tears. All wasted!!)

I would also like to thank you all for the lovely presents and cards that you have sent to Anna-Mae for her birthday. She had a beautiful bear all the way from Florida. He has been called Itsy and he is joining us on our holiday. Lucky bear!! We have let her open them as they have come in, as we are going to Egypt for her birthday. She has got an underwater camera, so maybe... just maybe, we might see Nemo.

Everyone, with the exception of me, are so excited. I hate flying! It’s not natural! My tummy has been in knots for days now. I am looking forward to relaxing by the pool with a good book though. We are going with Anna-Mae’s best friend in the whole wide world, Tory. I am a little worried about going so far with Anna-Mae… just in case. My husband must have got me to agree at a weak moment! I usually opt for camping in Cornwall. I feel safe there, just in case we need a hospital!! BUT, Anna-Mae has been really, really well over the last few months.

Update 12th February 2006

Just to let you all know that things are all good here in Devon with us. We had such a magical Christmas and New Year. Thank you to everyone who sent fantastic letters, cards and presents. The elves were especially busy! She also had daily cards from the reindeers, telling her what was going on. You should have all been here to share in the excitement! I loved it too! She also had some cards from a school in Japan. The cards and writing was beautiful.

Anna-Mae had a period where she was really under the weather. I think the cold weather had a hard hitting effect on her mobility, which really knocked her confidence. She has also been through a period where she seemed to be bearing the brunt of others, unkind words etc.

Andrew, Karen (honorary special auntie) and I have been overwhelmed collecting information, writing letters and compiling reports for Anna-Mae's school review, which was today. I have been dreading it, but it was in fact a very positive meeting. Not what I expected! We are trying to get her into a small independent day school (350 pupils) as opposed to our local comprehensive (1800 pupils). Mainly our reasons are for the safety and gentile ways, as well there being a nurse on site to help her with her continence needs. I will let you all know in due course. Fingers and toes crossed please!

In general news she has been moved up in her swimming class, and she is thrilled to say the least. We are also going to see her dance in a big show at the end of March and beginning of April. It's all done very professionally!

Update 8th February 2006

I made an early trip into town today to go and get some valentines cards. Anna-Mae is worrying that she won’t get any this year again, but on our return from school, there was a beautiful card waiting for her from a lady called Elizabeth. Anna-Mae was so touched; it now has pride of place on the windowsill, facing out for all to see!

Update 17th September 2005

That is such a lovely idea, the peppers. Anna-Mae was really pleased with it. We have printed it off and she has just gone into town with Charlie to buy a frame. It is going to take pride of place above her bed.

Whilst I am writing a few lines, I would just like to take a moment to say a really huge and heartfelt "THANKS" to everyone who has written to her, and to Charlie and Henry. We are all really touched by human kindness.

On the whole Anna-Mae has a really good summer. We are all so proud of her strength, courage and determination. Although she is a little feisty at times! She recently won 4 bronze medals for swimming in her first gala, as well a very large trophy, with the inscription " the Sunshine Trophy for the most determined swimmer" All of our hearts swelled with pride, I can tell you. She has a remarkable outlook on life and all the obstacles that it throws at her.

She had a blue period a few weeks ago, after retuning to school. She had chosen to stay with the teacher she had last year, as she adores this teacher, and the teacher has done so much for Anna-Mae’s self esteem and confidence, as well as the classroom being adapted to accommodate equipment etc, but she hadn't really thought about all of her class moving on. I think this dramatic change hit her full face on, but she is settling down well now. She announced at tea time through the week that she has thought about the situation and has decided that class times are for learning and playtimes are for seeing her friends. I do wonder where she gets this mature way of thinking from at times!

She did receive a parcel, through Post Pals, from 'online angels'. It really was the most amazing gift ever. A patchwork quilt that had been hand made. Truly beautiful and so precious. She made me promise it would never go into the washing machine! (Says a lot for my laundry skills) But sadly we can’t find them on the internet to say Thank you. So... she believes that real angels have made and sent her the gifts, as if they were real people, we would be able to find them. 

Anyhow, I must sign off for now, and carry on with the boring chores that Saturdays bring. Thank you 'ALL' once again.

Update 30th July 2005

Thank you for the e mails, Anna-Mae can’t believe peoples kindness. We have just returned from a short break to Butlins, and there were 11 messages waiting for her. She really is so excited about Post Pals.