C/O 69 Marlow Road,
Sanford Hill,
Longton
S-O-T
Staffs
ST3 7DP
United Kingdom

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

Email Pal

William S's Parents/Guardians

Tracey and Chris

William S's Siblings

Thomas 25/12/1996 Comedies, action movies, playing on the computer. Robert 10/05/2004 Toy Story, Buzz Lightyear, Ben 10, High School Musical, crafting, reading, writing. Stephen 07/09/07 likes cars, meercats, Peppa Pig, Mickey Mouse, High School Musical.

William S's Interests

Feeding the ducks, playing in the park, swimming, High School Musical, Peppa Pig.

William S's Favourite Colour

Blue

Is William S able to read?

No

Is William S able to use hands?

Yes

Is William S visually/hearing impaired?

No

Does William S suffer from any developmental delay?

No

Religion?

Catholic

Story written 2009

William has been poorly since he was 2 months old. It started with what the doctors said was Bronchiolitis but unbeknown to us something a lot more sinister was going on with our little boy.

At 17 weeks William had a barium swallow done to see if he had an opening in the oesophagus and milk was going into his lungs. This was to see if this was causing all his recurrent chest infections and pneumonias. It showed us that William had in fact got malrotation of the gut (meaning his stomach and intestines were the wrong way round). He was whipped to Alder Hey Children’s Hospital in Liverpool the same day and was operated on that evening.

William plodded on for a few more weeks but was still vomiting and not eating, so we had to tube feed him all the time. On the next stay in hospital I asked a consultant for a scan on his heart and this is where normal life ended as we knew it.

William’s scan showed that his mitral valve was leaking quite badly and he would need to have an operation as soon as possible. He had his first ohs (open heart surgery) when he was 7 months old to try and repair his valve. That was the scariest 4 weeks of my life… or so I thought.

Ten weeks after William’s first ohs, he started to become very unwell again and we went back to Birmingham Children’s Hospital to have him reviewed. They told us that the last operation had not been successful and William would need a valve replacement, so William was admitted and he had his second ohs, exactly 2 months after his first. We took William to theatre and I felt at ease because we had been through this before, but this was worse than ever as William was an extremely poorly boy after this surgery and the doctors were telling us to take minute by minute, not day by day at this stage.

Thankfully William pulled through this surgery, but during the operation William’s coronary artery got damaged. It has left his heart very impaired and he has very little function on the left pumping chamber, which has resulted in our little man needing a heart transplant.

This is where we are at the moment - just waiting until we get our call to give William the gift of life.

Update 8th October 2011

Sorry I’ve not updated for a while. William has not been great over the last few months with chest infections and general wheezing etc.

We had an admission again last week and we got to see the respiratory doctor who says that he feels Williams lungs are hyper inflated, meaning that he does not exhale properly and air is trapped in his lungs. He has ordered lung function tests and a ct scan on his lungs and started him on long term steroids to ease the narrowing of his airways too.

We are still on the active list for transplant.

Update 8th March 2011

Firstly, I’d like to say a big thank you to everyone who takes time to look at Williams’s page and also to those that send cards and treats to all of our boys. It means a lot to them. My husband and I also received a very thoughtful gift through the post from Dominic and Gethin’s mum which was a gift card for Pizza Hut, so a big thank you again to them.

William has had quite a few hospital admissions over this winter, not so much with chest infections but with very bad wheezy cough, which is causing him to de sat and work very hard with his breathing.

We went to Great Ormond Street at the end of January for his big 6 monthly transplant tests and they were quite pleased with him, but it did knock his coagulation off kilter and it took almost 10 days to get his blood within the desired range so as not to clot around his metal valve. We have to go back in April to see cardiac doctors and neurosurgeons to do with this syringomyelia that they found on his spine at the last check up.

Update 29th November 2010

Last week we went down to GOSH for a heart check up and they are really pleased with William and don’t want to see him now until we go down for the big tests again in April.

This cold weather is getting to William again already and we’re on our first treatment dose of antibiotics and I doubt it will be the last.

I would like to say a big thank you for all Williams post as he does enjoy receiving it.

Update 14th October 2010

William has had a pretty good couple of months. We took William on holiday in August to Wales and it was a lovely week.

The week after we went down to London for William’s big cardiac transplant tests, which all in all were quite good results. Not much had changed in the last 6 months, but unfortunately it was found that William has a new unrelated condition on his spine called SYRINGOMYELIA meaning that in time William will lose nerve sensations in his limbs, muscle weakness and deterioration and also loss of control over bowel and bladder. This was a bit of a shock for us but now it is just another part of William’s uniqueness.

A couple of weeks ago William was admitted to Birmingham children’s hospital as he was going to have a gastrostomy put in last week, but in the week leading up to the operation Williams clotting levels became too low and his artificial valve was at risk of becoming impaired, so they were worried about him and had him in on heparin in preparation for the operation. His operation went well but it did knock him for six, bless him. He was really sore and unwell for about 3 days.

William also started school in September and is currently doing Tuesdays, Wednesdays and Thursdays so as not to tire him out completely.

William would like to say thank for all his post he receives, he does enjoy it when cards and letters come through and we have been meaning to reply to them but it has been hard to keep up with everything over the last couple of months, what with hospital appointments and starting school.

Thank you also from a very grateful mummy and daddy. Your support means so much to us.

Update 24th August 2010

William went in to theathre yesterday for a few procedures. Today we are still in GOSH, as when they did the mri yesterday they saw an abnormality on his spine, so they want us to see a neurologist and a geneticist whilst down here.

I would like to thank everyone for their well wishes for William.

Update 30th June 2010

William is doing quite well this month. It started off a bit ropey with another hospital stay due to a chest infection, but he is doing much better now.

William has had a couple of big hospital appointments this month. One was to Great Ormand Street to see his cardiologist and they were petty happy with how his heart is coping, but want him down in the next month for the big 6 monthly tests again to see if lung pressure is still stable. If this continues to rise then William can no longer be considered for transplantation, so some prayers and well wishes would be great.

We also took William to Birmingham Children's to see a surgeon about having a gastrostomy (peg) instead, as William’s ng tube was only ever supposed to be short term and that was 3 and a half years ago now. They agreed and said we just have to wait for a date, so hopefully it won’t be too long for that.

Update 15th June 2010

Yesterday we went down to GOSH for a check up appointment and in general there is not a great deal of difference from last time we had an echo. We have got to go back in the next few weeks for cardiac cath again to check pressures in his lungs to see if he still stable enough for transplant.

Update 22nd April 2010

William has had another good month health wise and we seem to have luck on our side this year. We are still waiting to hear about William having a gastrostomy and finally getting rid of the ng tube as the poor little man gets so upset having it re-passed. I have to pull it out for him on Friday morning just because it has been in 6 weeks and I hate putting him through this, but I suppose there is not a lot I can do about it until he has g-tube done.

Any way i would like to say a huge thank you for all the support, letters of encouragement, cards and gifts. It really makes Williams day to get something through the post and it makes me a happy mummy too. As for all the lovely emails I have received this week - I am going to try and reply to them all this week at some point.

William has also got his Make a Wish day on Thursday this week - he has had a playground done in our back garden, so hopefully I can get some new pictures of him on his equipment.

Update 7th February 2010

I just wanted to let everyone know that we heard from Great Ormand Street on Friday morning and they decided to put William back onto the list. They said that although it will be a very high risk transplant, they are willing to take the risk. So now we are just waiting for the call.

Update 3rd February 2010

William has been a little unwell recently with bad chest infections. We also had to cope with the transplant team making the decision to suspend him on the list until he had his catheter done in January. We went down to London on the 19th for pre assessments to be done ahead of the cath being done on the 21^st. All went well during this procedure, but the news was not as positive as we would have liked as William’s lung pressures have increased. The doctor came to discuss the results with us and said that although the pressures had increased, they did respond to the tests they did which was positive, but they were still about the same as they were 6 months ago. This means we were still borderline whether he could be considered for transplantation or not. The doctor said to us that he could not just put us active on the list again just like that as it would need discussing with all teams involved what the next option is. From what he was saying there could be four options now…

One would be to go back active on the transplant list and be aware that it would be what he called a high risk transplant. Two is maybe we could attempt another valve replacement to put in a bigger metal valve to see if it reduced pressure, but this too would be very risky and he may not pull through. Three is that they consider trying to put him on the artificial heart (the berlin heart) to see if this would relieve pressure until a heart became available, but this in itself would mean William being hospital bound in high dependency part of ward for maybe months on end. The fourth option is they do nothing and just play with his medication as his heart starts to fail.

This was all to be discussed last Thursday in a big meeting they had, but sadly one of the doctors got called away, so we won’t know what they think the right route for us to take would be yet. As soon as we know, I will let everyone know too.

William sends huge kisses to all who read his updates and continue to send him post.

Update 2nd December 2009

William has not been too well over the last 6 weeks, but the bad weather is here and it takes its toll on poor William, as he just does not have the reserve to fight off all the viruses flying around.

We have had a few hospital admissions too recently, the first one due to shortness of breath, and they were that worried about him that they actually sent us to our nearest cardiac hospital, which is Birmingham Children’s Hospital, to check and see how his heart function was doing. This was not the news we had hoped for really, the doctor told us that basically he is outgrowing his prosthetic valve now and it is resulting in his heart failing quicker than we’d all hoped. While we were in the hospital he had his swine flu vaccine and coped really well with it, bless him, he is a total darling and just takes it all in his stride.

We were home for 2 days and ended up in again with temps of 39.6 so they isolated us as they thought maybe he had contracted the swine flu just before he had the vaccine, but luckily he tested negative.

We are hoping to stay clear of the hospitals now so we can enjoy Christmas at home as a family because we don’t know what next year holds for us.

William has to go back down to Great Ormond Street in January and go through all his assessment for transplant tests done again. So it means another anesthetic and catheter done to check his lung pressure which we are praying has not changed, as last time he had them done they came back borderline, and if they go higher then we can not go forward for heart transplantation and will have to be considered for a heart and lung block, which is much more rare to come by, especially in children as small as William.

Anyway, on a lighter note, I would like to wish everyone involved in Post Pals and everyone who sends mails to all the deserving children on this site, a merry Christmas and a happy New Year. Post Pals is an amazing organization, keep up the hard work as it is so worth it.

Thank you for Williams cards, the smile on his face when he gets these just melt my heart. Thank you to Lokryn and Talek for your lovely card and teddy bear - he goes to bed with William every night.