C/O 6 Inglis Road
Aintree
Liverpool
Merseyside
L9 0HL
United Kingdom

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

Email Pal

Holly S's Parents/Guardians

Hayley and Gary

Holly S's Siblings

Joshua 25/07/98 Joshua is a very caring big brother as he has a lot to do with Holly's care and he has been trained to maintain Holly's airway for her in an emergency which is a very scary thing but he is extremely brave. He likes all types of sport especially football and basketball. His favourite football team is Everton. He loves listening to music especially Artic Monkeys, Rock, R&B. Joshua is learning to play the drums and guitar and is trying to form his own band. His dream is to become a professional football player and one day do a sky dive. Ruby 26/10/07 She enjoys playing on the trampoline, all things to do with Toy Story and Disney, playing dress up with Holly, Peppa Pig, dancing to Mickey Mouse Clubhouse songs, reading books and drawing pictures.

Holly S's Interests

All things pink and girlie, she loves having her nails painted and then having a nice massage with her favourite creams. Holly also enjoys dressing up as a princess and with sparkly beads, listening to music to relax and playing with musical instruments. She enjoys listening to stories with something to touch, feel or smell. Holly enjoys lots of arts and crafts activities where she can get messy and feel lots of different textures. She likes baking cupcakes with her dad and she also loves swimming in warm water as she doesn't like cold water much!

Holly S's Favourite Colour

Pink

Is Holly S able to read?

No

Is Holly S able to use hands?

No

Is Holly S visually/hearing impaired?

Yes

Does Holly S suffer from any developmental delay?

Yes

Story written 2010

Holly was born fine but when she was 8 weeks old she suffered a series of respiratory arrests and ended up on a life support machine for 3 weeks. The doctors then decided that it would be best to turn Holly’s machine off as there was nothing else they could do for her and her chance of surviving was nil, so we had Holly christened and everyone came in to say their goodbyes. Then we turned Holly’s machine off and for the next 24 hours she battled her way through and the next thing a miracle happened and Holly opened her eyes. That was the sign she gave us to tell us that she was prepared to fight and who were we to argue with her. The doctors told us that Holly would not live for very long as she had been left with cerebral palsy, epilepsy, chronic lung disease and oxygen dependant. She had to have a tube fitted in her stomach so she could be fed and she had a visual impairment, but if Holly was prepared to fight then so were we to make sure she lived a very fulfilled and happy life for as long as she was with us.

Over the next few years Holly spent a lot of time in hospital and on many of those occasions she ended up on a life support machine in intensive care. This was due to many things but the most frequent was a chest infection that would very rapidly develop into pneumonia for her. On every occasion we were told that the outcome was very bleak but what the doctors didn’t realise is that Holly is a very brave and strong little girl who has a passion for life and is determined not to let anything beat her.

In the last 12 months, Holly’s breathing started to deteriorate and for many months we were going back and forth to the hospital to see if they could help Holly, but every time we tried a new medication there was no success, so Holly got to a point where she could not go on like that any longer. The doctors told us that she would have to have a tracheostomy fitted as there was no other option, so they took Holly down to theatre and inserted a tube into her throat to help her breathe, and as usual, Holly came round from the operation with a glint in her eyes.

Now it’s like she has been given a new lease of life as she can breathe a lot easier. Holly has a lot to go through each day and she has a lot of epileptic fits every day, amongst other things, but she never complains and she is the most inspiring and brave person I will ever meet. Holly doesn’t get a lot of opportunities to socialise or make lots of friends which is why I think Holly will love receiving post and having it read to her and also being able to make lots of new friends.

Update 10th November 2011

Hi everyone, I’m so sorry for my lack of updates. Holly is having (on average) two appointments a day, so tying to fit everything in is proving hard.

Holly’s had a stable time over the last couple of weeks and I think the fact that the weather is still quite mild for this time of year is helping. We always find the winter particularly nerve wracking and we find we just keep praying that her chest stays clear each day.

Ruby had a lovely birthday in October, she went to our local play centre with her friends and brother and sister for the afternoon, and then the highlight of the day was that she went to the build a bear shop. She got to build her own bear and buy him an outfit which she thought was amazing and strangely enough she has decided to call her new bear sausage roll ha-ha!

Josh has been really busy over the last couple of weeks as he has been filming his sky1 programme with John Bishop which will be shown at Christmas. He had the most amazing time and met some lovely people so we are all really excited to see him on the television.

We have also done some filming for Children In Need this month regarding our local children hospice, Claire House, so that should be shown on the BBC on the night. I just hope they make me look a little younger and hide my bags from under my eyes ha-ha!

Holly will be 10 in December and its going to be such a monumental day for us all as we were told that Holly would never see her 2nd birthday, so for her to reach double figures is such a big deal. I’m busy trying to arrange a big birthday bash for Holly, its going to be a fancy dress party with a winter wonderland theme and I want Holly to be the belle of the ball for the day. I’m so excited as it gives me a big opportunity to show off my amazing daughter and tell everyone how proud I am of her and what she has achieved, so I’ll hopefully have lots to tell you next time i write.

As always, your kindness is never lost on our family as a whole. The Halloween bags went down a treat and Ruby is still scaring everyone with her spiders! Someone also sent the girls two bears to build and I must say it was a really enjoyable activity for us to do together. Thanks, as always, to Dominic who keeps us entertained with his antics! Ruby also received a present all the way from Stacey in the USA which was amazing!

Much love to you all xxxxxxxxx

Update 31st August 2011

Hello everyone, firstly can I say a massive sorry for my lack of updates, our life has been so hectic over the last couple of months and I don’t even know where to begin. Let’s start with Holly!

Well, after Holly having such a bad winter, she had to go in and have an operation to have a portacath fitted into her chest. This is so that the hospital has got immediate access into her veins so they can treat her quickly. That went well and as usual Holly seemed to breeze through in her amazing manor like she always does. It was a little harder for me to deal with at first as I didn’t like the line that sticks out in her neck and I also felt like it was something else which is always at risk of infection, so in turn puts Holly at risk.

We then had to start a big battle with everyone. As I'm sure many parents will agree, you have to fight for every bit of help you need and it started to take its toll on me which I have never let it do before, so I was finding it hard to write updates as well as just getting through the day. I’m feeling much better now though so I promise to keep up to date as much as I can.

Holly has had a mixed summer, some good weeks and some bad weeks, but in the whole we have managed to avoid hospital which is always a bonus. She got a lovely surprise as her family all clubbed together and bought Holly an IPad 2 with a pink cover, of course! We are still trying to work it out and learn about buying good applications for her for it. She has also got lots of her favourite films on there though which is great. We are just trying to find an arm that will hold the IPad and attach to her wheelchair so she can watch as she travels! She is such a princess but I must say Holly has been stuck in a lot over the summer.

The one thing that helps her to get through is all the wonderful post she receives - from letters, postcards, parcels; it is all so uplifting when it arrives and it brightens up her day. I’m still astounded by people’s kindness and the fact that they take the time to care. You are all such special people and we treasure everything that Holly receives.

Ruby seems to have grown up a bit over the summer as she never stops chatting and she is always on the go, which is really lovely for Holly as she always includes her. She is in love with everything Scooby Doo and Cars 2 at the moment so poor Holly has to give her a ride around the living room on her chair and pretend she is the mystery machine. She is just about to go back and do her second year at nursery so she is very excited as she will be one of the big girls this year.

Josh has also been very busy over the summer as he entered a competition to become Liverpool’s Young Stand Up Comedian of the year and out of 250 children HE WON hooray!!! This was a massive achievement and so now he is doing some performances to help out people and gain more experience, but he’s been interviewed by our local radio stations and also appeared in the local press which has been very exciting for him, so maybe one day he will be following in John Bishop’s shoes!! He has also been keeping up his drumming and has done well with that.

We are trying to have some days out this week as a family all together but the weather is not too great in Liverpool so we’ve got our fingers crossed that it brightens up soon and we manage to get out all together and do some fun stuff.

Anyway, I hope you are all well and I wanted you to know we really do APPRECIATE all the post that lands on our doorstep, I just wish I had the time to write you all replies, but unfortunately my days are so full with medicines and feeds and changing as well as trying to see to Josh and Ruby. There are just not enough hours in the day. Sending you all lots of love and see you all next month xxxxxxxxxxxxxxx

Update 23rd March 2011

Hi everyone Holly had surgery yesterday (had a port put in) and came out of the operation well. She has coped well with the surgery but has come down with a chest infection over night so she's now trying to fight that off with ivs for the next two weeks.

Update 11th March 2011

Well, what can I say about this month? I have spent most of it at home as I have not been strong enough to go out yet. My chicken pox have left lots of marks all over my body so I’m hoping they fade soon. My poor brother and sister have been ill as well this month with throat and ear infections which hasn’t been very nice for them. I am at home at the moment having lots of different medication to try and get rid of MSRA. This is because I’m going into hospital on the 22nd of March to have an operation. I need to have a line put in my chest so they can get medicine into me more easily, as all of my veins are not very good at the minute. I’m not looking forward to the op but my mum and dad said it won’t hurt once it is done, so fingers crossed everyone.

My dad had a nice birthday this month. We made him a cake which my mum tried her best with, but it wasn’t as good as my dad’s cakes haha!

Holly has received some fabulous post this month. A card came all the way from Betty in Australia, we had a lovely postcard from Liz with a picture on so we could see where she lives, a lovely cat card from Jenny, and then all the children received some wonderful personalized Valentine cards! Scott also included some Valentine chocolate which went down really well. Dominic has been really busy again this month with lots of tales and he sent some lovely Winnie the Pooh tea towels. Dottie also sent me a great letter telling us about her passport so we can’t wait to see where she ends up. Jenny sent me a lovely letter with a picture of her Dragon in – oh my goodness, Josh loved it and he also thought the paper he received his letter on from Jenny was very cool.

How lucky have we been this month as Ruby and I received some lovely teddy bears at the beginning of the month from Jane. Josh was so happy with his camera and photo album from Jillian Malcolm and Angus too and he has decided to save it for a family day out when it gets warmer and Holly can go out again. I’ll post some pictures when he’s done it. Ruby has been very happy at bath time this month as she received some rubber ducks from Jooles, Emily and Daisy. Holly also received a great height chart and some stickers, but unfortunately Holly was taller than the chart, but we had great fun trying to lie it next to her! Penny, I promise to try and grow a big pumpkin. Also, Adam and his mum Lesley sent us some seeds and a lovely foil scratching picture that my dad has been helping me do. The noise and feel is quite funny but it goes through my mum! I also have some different coloured nails this month thanks to Melanie who kindly sent me some new ones and last but not least, I was so surprised to receive a signed postcard from Gordon Ramsey - oh my goodness how fab! Thank you so much Jenny. Also, Ruby and I have made some great badges and my Japanese bookmark is fabulous. Finally, we received another card and stickers from Sophie from Holland - Josh was so happy with AJAX stickers.

Anyway, thank you to everyone for thinking of me again this month, as when I am stuck in the house all the time it really brightens my day to receive post. I’ll speak to you all again soon when I’ll have my new line. Take care everyone, love Holly xxxx

Update 5th February 2011

Hello everyone, well not much to tell you about this month as I have been too ill to do anything. My chest didn’t seem to get any better from before Christmas and then a couple of weeks ago I broke out in chicken pox (for the second time). At first it wasn’t too bad except I was really spotty (I looked like Dottie the Dalmatian haha!) but then I became very ill very quickly so my mum and dad rushed me to hospital in an ambulance again and when we got there the doctor discovered that I had pneumonia again. This time my right lung had collapsed with it and by this time I was vomiting and not feeling very well at all. I was struggling to breathe which isn’t very nice so the doctors said I needed to get a line in quickly so they could get some medicine into me, but the only problem with that is my veins are damaged from all the treatment I have had before so it was very difficult. After 8 attempts and some very sore arms, legs, hands and feet, they finally got one in.

The next day was just as hard as I had not been to sleep for a couple of nights so I was feeling very tired and everything was becoming very hard. The doctors came in to see my mum and dad and they were not very positive about me getting better, so my mum sent them away and said that they had no choice but to make me better. That was a very sad day as my mum was crying all day because she was worried and then when Josh came up to visit me after school he was very sad as well so I decided to get some sleep that night and I think that helped me, as after a couple of days and with lots of medicine and lots of physio, I started to breathe a little easier and I could see my mum smiling again, which is always a good sign. My mum and dad asked the hospital if they could bring me home with my line in and look after me at home with the help of the outreach nurses and my chest doctors said yes, as they know I like my own bed much better than the hospital ones as they are a little uncomfortable. 

So we are home now and slowly but surely I’m starting to feel a bit stronger each day. My consultants think it will take at least 6 weeks for my lung to repair itself so I’m still on lots of different medicine to protect it, but at least I’m at home. My mum and dad keep telling me that I’m a good girl for sharing all the time and I didn’t know what they meant and then they told me that Ruby had caught my chicken pox, so now we are both spotty but at least I know how to share!

Anyway I hope you have all had a nice January and I’m really hopeful that February will be much better, as it is my dads birthday so I’ve got to start planning his cake. Unfortunately my mum isn’t as good at cakes as my dad but I can’t ask him to help haha!

Thank you this month to Claire for your lovely hand made get well card that must have taken you so much time, I loved the design it is so girlie and pretty. I also received a fabulous postcard all the way from Florida from Liz and hearing about her adventures brought lots of happy memories back for me and my mum when we were reading it. We just hope we get to go back to meet Mickey again one day. I loved my pink spotty card that came all the way from Scotland as well, it’s my favourite colour as you know, I do hope you got your biscuits made in the end Tyrie. Dominic your letters are brilliant - me and my family love listening to your adventures and thank you so much for your gifts that come along as well, we all loved our surprises, thank you. As always, Dottie’s letters make us smile, but I think the snow angel is my favourite. Jenny, I’ve been thinking about your nails for your wedding and me and my mum think a nice French manicure would look lovely on your big day. Thanks for all your lovely words over the last month and showing such care to me, we hope you and Ben are still having lots of fun and my mum can’t quite believe how many animals you have. I love my music cd that Terry made for me too, thank you so much; it is great listening to it with my lights on. Penny, thank you so much for the paper mache pig, me and Ruby are going to enjoy getting messy with that as soon as I feel up to it.

Thing have been very bleak this month and some days are harder than others, so when you receive bad news about your child lying there and you know that things are completely out of your control, it is the worst feeling in the world for a parent. Thank you to everyone who sent get well wishes to Holly this past month it has been so hard and when I receive a wish message to know that someone out there cares and is willing her to get better as well, it is just the tonic you need. Joshua and Ruby have just as hard a time when Holly is in hospital as they are passed from pillow to post and not knowing when they are going to see their mum and dad next is really difficult, so when they receive some post and it lifts their day, it is so lovely to see. Thank you again this month for helping to make a very bleak month in our life a lot brighter.

Update 22nd January 2011

Things have been really bad here and we had to call an ambulance on Tuesday. Holly has got bad pneumonia from the chicken pox and her right lung has collapsed. They said on Wednesday that she might not make it, but thankfully she has done what she normally does and turned it all around on Friday. She seems to have turned a corner thank goodness.

Anyway, I'll keep you posted how it's going. It's been really traumatic for Josh as well this week as he understands what's happening so he's been really worried and asked me to promise not to let anything happen to her. So we are hoping for a better week next week all round.

Update 14th January 2011

Holly has broken out in chicken pox tonight!

Update 13th January 2011

Happy New Year everyone! Well what a month I have had since we last spoke. It was my birthday on the 6th December and my mum and dad had arranged for a pony to come to my house with a carriage and I was going to put glitter all over the pony and carriage and then I was going to be wheeled on in my wheelchair and taken for a ride just like a princess. But guess what? It snowed and the party people couldn’t get here so my mum was really upset for me but she quickly put plan B into action and arranged for a lovely lady called Polly to come to my house and do a make over on me and my friends which was lovely. We all had hand and foot massages and we got our nails done and then we finished off with a bit of wheelchair dancing. I had a lovely day and really enjoyed myself but I started to not feel too well as the day went on.

By the next morning I was not feeling too great at all so my mum and dad had to phone an ambulance and I was taken into hospital. It turned out I had pneumonia so the doctors put lots of lines in me and started giving me some medicine to make me better. The next couple of weeks were really hard as my breathing was not very good at all and I needed medicine and special massage on my chest and also special nebulizers all the time to help me breathe. My mum and dad asked the doctors if they could bring me home and look after me at home so they said yes and we had some lovely nurses coming out every couple of hours to give me iv medicine and to check I was ok. It was very hard for Ruby and Josh because my mum and dad were doing everything for me so we couldn’t really go out or do anything, but they never complain.

I started to feel a little better just before Christmas but then on Christmas Eve I was not good again so we had to call the nurses back and it all started again. I slept for most of Christmas day but when I woke up I was so excited because Santa had been and left me lots of surprises which Ruby was desperate to help me open. I also got lots of lovely post while I was ill in bed and it was such a treat as the days can be very long when you are not well but too ill to get up. My sister and I loved all our reindeer letters - we loved hearing what they were up to and Ruby was so happy when she found a chocolate coin in one of hers.

Things are still a bit tough as my epilepsy has gone bad again now because of my infection, so my mum and dad have to keep giving me my emergency medicine, but my consultant said I should start to feel better soon. I hope so!

While we were at the hospital yesterday, he told me I have to go in soon to have an operation to have a line fitted in my chest so they can get medicine into me more easily. I’m not looking forward to this but my mum promised me it will all be ok.

Josh and Ruby wanted me to say thank you to everyone who made our first Christmas with Post Pals so special. You are all very very very kind and we all really appreciate it.

So, for now, I hope you all have a good month and I hope next time I write I’m feeling much better.

Oh and just one last thing - Dominic from Cheshire, you are so funny and your letters have all my family laughing! Thank you, love Holly xxxx

As a note from Holly’s mum, I just want to say that our Christmas was lifted this year with all the kind words and thoughts that were sent to us. It is a wonderful escape and the smiles it puts on the faces of my children is priceless, so thank you to everyone who took the time at such a busy time of year to think about us. I would love to have the time and opportunity to write back personally to you all, but I’m afraid I just don't, but I wanted you all to know that we appreciate everything so much. Happy New Year to you all and once again, thank you from the bottom of our hearts xxxxxx

Update 7th December 2010

Holly was rushed into hospital today with a bad chest and she is on HDU. My mum wanted me to say thank you to everyone who sent Holly lovely birthday wishes.

From Josh (Holly’s brother).

Update 29th November 2010

Well, what a great month of post I’ve had. Firstly I saw myself on the newsletter then I have received some lovely textured paper from Penny which I’m going to use to make some Christmas cards with I think. Then one cold day a parcel arrives for me, Josh, and Ruby, so we had to wait for Josh to come home from school which was really hard but it was well worth the wait as it was full of chocolate. Josh couldn't believe his eyes ha-ha! Then to top it all off some gorgeous bobbles and hair bands arrived which I really love as some of them jingle so I’m going to wear them to any Christmas parties I go to. 

My health has been quite stable this month so I feel really lucky as Ruby has had a bad chest infection so my mum has been keeping us apart to try and make sure I don’t catch it. I hope my health stays well as I’ve got a big week coming up as its my birthday (hooray!) and I’m going to be nine - which considering the doctors said I wouldn’t make my second birthday, it really is a day to celebrate. My mum and dad have said they have got a big surprise for me but they won’t tell me so I’ll let you all know next month how my day goes.

Anyway, I hope you all have a magical Christmas and you get all that you wish for. I’d like to say thank you in advance to you all for taking the time to keep in touch with me. Sometimes when I’ve been up all night with low oxygen or I’ve been fitting all day, it’s such a treat to listen to all your stories and open all your very kind gifts. All of my family send their love too. My brother Josh is doing his first stand up comedy performance in a restaurant where we live soon too so I’ll keep you posted as to how he gets on.

I received a lovely postcard of Dottie this month (I love hearing about all of her tales) and the lovely Kate sent me a card with lots of cupcakes on which me and dad thought was great. I was so happy to see myself on the Dottie newsletter, how exciting was that! I have shown all my family. Christmas has also well and truly started in our house with Ruby’s reindeer letters arriving, she gets so excited and now comes back from nursery every day and asks if Father Christmas has sent any post again ha-ha! Wow what a gorgeous sticker book I received this month too from Lianne and Craig, thank you so so much.

Post Pals has put a real sense of excitement and joy into our house, so thank you to everyone, you are all wonderful people.

Take care everyone, lots of love Holly xxxx

Update 10th November 2010

Well what a lucky girl I’ve been this month to receive such lovely card letters and gifts. October has been really busy as I have had lots of hospital appointments so its always nice after a long day at the hospital to come home to some lovely post to read to cheer me up.

I had my little sisters’ birthday party to look forward to this month and we had a great day at her Toy Story party. My mum painted my face with pretty flowers on and lots of glitter and my Auntie Rach got dressed up as Jessie from Toy Story and surprised Ruby with a Barney the Dinosaur cake which I helped my dad to make. Unfortunately I had a big fit half way through the party so I had to sleep the rest of the party but I had a really good time while I was awake. My new medicine is helping me lots with my fits now.

I don’t know about anybody else but its gone really cold up here now so I’m finding it hard to get out as much now as I struggle with my breathing when its really cold, but we did go to the cinema the other day because its nice and warm in there.

I also entered a completion at my children’s hospice to have my picture used on their Christmas cook book which was a gingerbread man made with my finger prints and guess what - I WON! Hooray! So I had my picture in the local paper with the chef Marco Pierre White which was a nice treat.

Anyway, this month I’ve got to start thinking about my birthday as my mum is wondering what we can do for the day. My mum is looking at special treats for me to do so I’ll let you know in December.

Holly received a letter all the way from America this month from a very kind person called Karli and she loved her stickers, we have put them around her notice boards. Also Ruby and Holly love to hear all the adventures of Dottie and all the family. We also love to see Hello Kitty landing on the door mat. Oh my goodness how lucky has Holly been this month! She has received some lovely gifts. Claire sent her a fabulous story CD which we have listened to lots, and then we had an amazing pair of panda bears that say ‘I love you’. Holly has responded really responded to them and we put the panda around her hands and she likes the vibrations from them. Best of all they came all the way from China so a big thank you Liz for thinking of Holly. Then along came Halloween and I must say there were lots of screams coming from our living room as Josh was chasing his sisters around the living room with his scary spiders. Sarah, thank you for putting so much hard work into Holly’s Halloween card, she loves feeling lots of different textures.

Again a big thank you to everyone who has thought about me and my family this month it really means so much. I know my mum would love to reply to each and every one of you personally but I need lots of care through the winter so my mum dads’ days are really long looking after me and my brother and sister. She wants you to know she really appreciates everything.

Update 1st October 2010

I started September quite well and me and my mum went on a face painting course together which was really fun, but my mum keeps painting my face now! My favourite was a Hello kitty design. I also got invited to a special night by Liverpool fire brigade, as they wanted to present my children’s hospice with a great big cheque, which was lovely for them.

However, as the weather seems to have got colder, my chest has been quite bad lately and I’ve also had lots of problems with my epilepsy, so my mum and dad took me to hospital where the doctor has given me 2 new medicines to try which seem to be working at the moment. It has been hard for me to get out of the house over the last couple of weeks, so I’ve been keeping busy at home doing lots of baking with my Dad, and I’ve also had lots of manicures which has been really relaxing. Josh and Ruby have also enjoyed eating all the cupcakes.

Both Josh and Ruby have loved receiving their special letters and gifts too, so they wanted me to say a big thank you to everyone for them.

I have just finished off September with some really bad news, as one of my friends has just gone up to heaven and I am going to miss her lots.

Post Pals has made my weeks a lot brighter though, it’s so exciting for me and my brother and sister. I received lots of gorgeous hand made cards which must have taken so long to make, so I want to say a big thank you to everyone who sent me cards. I loved reading lots of interesting and funny letters this month too - I love hearing all the tales that Spotty’s sisters and brothers are getting up to and I also got a lovely picture of Barbie sent to me coloured in so nicely by Jodie. I was so happy to receive such lovely thoughtful gifts from all the kind people this month. Sarah made me a lovely door plaque with my name on and I listen to my personalised princess CD almost every day - my favourite song is Beauty and the Beast, I think. I have had lots of messy time over the last couple of weeks and we have lots of birthday cards to make for our family so it has been fun.

I hope you all have a great October - I’ve got my little sisters Toy Story birthday party to look forward to so I’ll let you know how it goes next time.

Much love, Holly xxxxxxxxxxxx