We're delighted to say that Charlie is back home in England :) and for the first time in his life, able to eat solid food like the rest of us.
in the USA
in the USA
There have however been unscheduled developments, for when Charlie was *finally* able to start eating solid food, the UK "valve repair" - done back in September 2001 and never previously able to be tested with a fully-working oesophagus - sprung a leak. Charlie had to have yet another operation, almost immediately, to repair the work that was done previously in the UK.
The American hospital offered vastly-reduced costs both for the new operation and the previous set of three, to help save Charlie's life. Not only could the stricture have closed completely at any time, but when they opened Charlie up initially, the surgeons discovered the oesophagus was attached to the heart wall and the "fascia" of the vertebrae where they found a golf ball sized mass of tissue at the site of the rupture after the failed UK "dilation" operation. How long would Charlie have lived if he hadn't had these operations in America as soon as he did?
We are all *so* relieved that Charlie is still with us ... and more so that he has the prospect now of a completely normal life. Without Professor Foker and his dedicated team at Minnesota, the outcome could have been so very different.
However Charlie's family have faced a total outlay for the operations, flights and accommodation of around $167,000 - just over £100,000. A small price for a healthy child, maybe :) and certainly money becomes a secondary consideration in such situations - but the fact remains that much of this money has had to be borrowed. Our sincere and grateful thanks to those individuals and companies [see below] who have helped by sending donations.
Further down this page you'll find previous updates and my first letter which gives all the medical background. Feel free to e-mail us if you'd like more information - we know other parents must be facing similar situations where their kids need medical treatment which is available and yet - for whatever reasons - apparently not offered or funded or recognised by the English medical system.
Thank you *so* much for donations received so far:
£500 from BT Group plc *** £3000 from neighbours *** £450 from Kathy *** £100 from Rene Iacopini *** £10 from Clare Finan *** £30 from Cameras2U *** £50 from Mr. J. King of Matalan plc *** £1000 from Canary Wharf plc *** £10 from Mrs P Bowman *** £20 from Jane Mack *** £5 from Margaret Pearn *** £25 from Mr + Mrs Hawkins *** £20 from Mr & Mrs Bolas *** £100 from the office of Marjorie Scardino of Pearson Plc ***
Total received to date: £5320
Our thanks go also to the following companies for discounts and vouchers received: *** discounted airfares to the States from British Airways *** £100 of vouchers from the Chairman of Pizza Hut for Charlie and his friends *** £50 of vouchers from Dixons plc.
CHARLIE YELLOW update 18th September 2003
Further to my earlier letter [below] the hospital in Minnesota had already reduced its fees, to allow this urgent operation to go ahead as soon as possible. In the end Charlie's parents borrowed the rest of the money, because they couldn't bear to see Charlie suffering any longer because of the NHS's refusal to pay for this desperately-needed treatment.
Charlie has now had a sequence of three operations to repair and extend his oesophagus (and to repair the damage caused by the failed stricture dilation previously carried out in the UK).
We're delighted to say he is now able to eat solid food for the first time in his life :) He's out of hospital, slowly building up his strength, and due back from the States in a week or two.
We cannot adequately express our thanks for the dedication and skill of Professor John Foker and his team at Minnesota University Hospital.
|The Gate House, South Gardens,|
Burnt Hill, Yattendon, Berkshire RG18 0NF.
Friday 15th August 2003
WILL YOU HELP CHARLIE YELLOW
Charlie Yellow is my Grandson and he's seven years old. He needs medical treatment he can't get in the UK and *somehow* we have to raise $100,000 for him to have the week long operation and 5-6 weeks aftercare in the United States.
Charlie was born with a hole in the valve of his stomach and a stricture (narrowing) in the centre of his oesophagus. The malformed valve allowed stomach acid to burn his oesophagus on a regular basis for the first five years of his life.
It wasn't diagnosed until he was nearly six when it took a Doctor in Spain, where Charlie was on holiday just three days to find what was wrong. It seems unbelievable that none of the English Doctors he was regularly taken to could manage to actually diagnose his appalling problem in five years - and that Charlie had suffered so long and so needlessly as a result.
An operation in London to close the hole in his stomach valve was carried out in Sep/Oct 2001. This still left the stricture that had become seriously damaged and scarred during the years while the problem wasn't diagnosed. An attempt at dilating this in April 2002 caused a rupture, burst through thoracic tissue, and collapsed his lung, hospitalised him yet again for three weeks, and caused yet more damage and scarring to his oesophagus.
If you can imagine the oesophagus as a tube some 30cms(12ins) long and 2cms (3/4in) diameter, down which you swallow food. Take a section in the middle 5.5cms(2 1/2ins) long * yet only 3-4mm * (one eighth inch) wide and you can see very little apart from liquid will pass the middle section.
This is Charlie's problem. He can't eat because he *cannot* swallow anything other than fluid. He is constantly hungry and distressed because he can only swallow liquidised food. Charlie's only seven years old and this is a huge load for a little boy. If he'd been correctly diagnosed and treated properly to begin with he might not have sustained all the damage that now needs to be repaired.
There's a technique available at the Minnesota University Hospital USA from a team led by Professor John Foker - to repair and stretch the oesophagus so that it 'regrows' during an operation lasting a whole week - This will give Charlie the chance of a completely normal life.
This procedure is just not available in the UK. Professor Foker has seen copies of all the recent X-rays and tests and is confident of successfully performing this technique on Charlie..... the first English child to be offered this procedure, and has said he can operate some time over the next 4 weeks.
We are intensely aware of the fact we will get only one chance to make the right decision, and we and Charlie will have to live with that decision for the rest of our lives. We are desperately trying to raise funds to pay for this and the necessary 5/6 weeks stay in USA.
Charlie is a gutsy, sporty little boy, who despite his recent operations and setbacks during the past year still managed at his School sports day in June to win the long jump and cricket ball throw, and was second in the 100m and hurdles. He gives life his best shot - but he's had a pretty raw deal so far, through no fault of his own................... he says "What he wants in the whole world is to get better"......
John Soulsbury [Charlie's granddad]