2 weeks to live 4yo celebrates 18th birthday
Published: February 3, 2006
An “invincible” boy who was given just two weeks to live as a four-year-old has beaten the odds to celebrate his 18th birthday on Sunday.
Matthew Little, of Bents Close, Clapham, was diagnosed ten years ago as having the genetic defect velocardio-facial syndrome.
But he has battled the illness, along with learning disabilities, problems with his spine and countless operations, to be well known as a lively presence around Bedford.
His mum Jane Little said: “The fact that he is turning 18 after all he has been through is quite something. When he was a baby I never imagined we would see this day.
“We thought on his fourth birthday that he only had two weeks left to live, and he spent two birthdays and two Christmases in Great Ormond Street Hospital. I wouldn’t like to say how many anniversaries have been bittersweet because we didn’t know if it would be his last one.
“But he has been with us through it all – he must be invincible.”
Over the years Matthew, who attends Ridgeway School in Kempston, has had five major operations, and Jane has lost count of the number of minor operations.
She said: “He is a bit of a pioneer because I believe he was the first person in Bedfordshire to be ventilated at home. A team of nurses keep an eye on him overnight, and it makes such a big difference that he can sleep at home despite the problems with his heart.
“After the last big operation he spent ten months in hospital and missed a whole year of school.”
Matthew, who sometimes uses a wheelchair, is a keen music fan, and also enjoys playing on his PlayStation and watching videos.
He has another 18 months left at Ridgeway, and hopes to then start at a residential college in Coventry or Skegness, to continue learning life skills.
Jane said he enjoys a normal relationship with his brother Christopher, 14, and sister Amber, 11, as he gets on with them – and also falls out with them – as all siblings do.
She said: “Matthew was born three months prematurely, so his problems started from day one. And it seemed he was one of those people for whom if something could go wrong it would, so his problems just snowballed.
“When he was eight he was diagnosed as having velocardio-facial syndrome, which means that a small part of one of his 22nd chromosomes is missing, and that is what affected his heart.
“He has also had problems with his spine, which mean he would not be able to play contact sports if he was ‘normal’. The doctors are not sure but it may be because of the amount of surgery he has had over the years.
“And they don’t know if his learning difficulties are related to the genetic defect, or if that is something he would have had anyway.”
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