Boy who defied doctors’ expectations packs bag ready for school

The mum of a little boy she thought she would never bring home is getting ready to wave her son off at the school gates as he starts year one this September.

Five year old Jay Carter, from Crawley, was born with tracheo-oesophageal fistula – a condition where an abnormal connection runs between the trachea and oesophagus. Jay’s condition was so severe that Mum Jo didn’t think he’d survive. And for the following year, Jay battled for his life undergoing numerous procedures – including having an oesophagus rebuilt – at Great Ormond Street Hospital (GOSH), two hours away from the family’s home.

Because of his condition, Jay has been fed through a tube all his life and has also required a stoma bag on his neck to catch fluid which passes through the abnormal connection. For the last five years, Jay has undergone many procedures and was finally strong enough to undergo something called a gastric pull up at GOSH, where part of his oesophagus was replaced with reconstructed stomach tissue and his stomach was moved up into his chest. As a result, Jay no longer has to have the stoma bag on his neck. He is also trying food for the first time and enjoying a few teaspoons of yoghurt daily, in addition to his tube feeds, before heading back to school to start year one. Mum Jo says:

“Jay has spent a lot of his life in hospital, mainly at GOSH and to be completely honest, I never thought I’d be taking him home. As a mother, when your child is so poorly your mind immediately jumps to the worst outcome. But as a family we received so much support for which we will always be grateful for, not only from the hospital team but from The Sick Children’s Trust. The charity were there for us at the beginning of Jay’s journey, giving us emotional support and free ‘Home from Home’ accommodation for four months during Jay’s treatment and latterly as he underwent the gastric pull up operation.

“Our son has surpassed everyone’s expectations and he’s very much loved by all who meet him. He’s so resilient and such a fighter. When Jay had to leave reception early for his operation, he was determined to make it out of hospital to enjoy the summer holidays with his brother and get ready to start year one

“When Jay goes back to school and starts his next chapter I will be the proudest mum in the playground. Jay has come so far and doesn’t let anything hold him back – not even his war wounds.”

Jay underwent the gastric pull up operation in July and made a speedy recovery, and was back home within a few weeks. During his time in hospital, his family were supported by The Sick Children’s Trust. The charity runs free ‘Home from Home’ accommodation across the country, supporting families with seriously ill children in hospital. Jo, Dad Michael and brother Taylor were supported in the charity’s Guilford Street House, located just minutes from GOSH. Jo adds:

“Being supported by The Sick Children’s Trust in free ‘Home from Home’ accommodation was the support we needed. When Jay was a baby I thought I was going to lose him and I was never separated from him because of the support we were given by the charity at Guilford Street House. When we had to go to GOSH recently for surgery, we were told we had a home again at Guilford Street. Tina, the House Manager, is fantastic, she’s just so lovely and welcoming. And the best thing was – I knew where everything was which meant it was so much easier to focus on my son.”

The Sick Children’s Trust runs ten free ‘Homes from Home’ across the country, and completely relies on voluntary donations to keep its houses running. Jo, along with her friends, will be fundraising for the charity as thanks for giving her a ‘Home from Home’. Guilford Street House Manager, Tina Thake, says:

“Jay is an absolute superstar who takes on everything that comes his way. He’s a gorgeous little boy, who is always smiling and happy. We wish him the very best as he starts year one and are so pleased to hear he’s finally going back to school!”

For further information about The Sick Children’s Trust, please visit http://www.sickchildrenstrust.org/