James Thompson Richards
Nov 16, 2006
James Thompson Richards looks like any normal 13-year-old boy.
But he is not.
James was born with Severe Combined Immune Deficiency Syndrome – SCIDS. With no immune system he has spent most of his life in sanitised isolation.
“Just say I get the flu or I catch flu from someone in my class, I get it like four times as bad. But I feel like i’ve got the flu every day. Its’ just like eating, It’s just part of my life,” James told Close Up.
Only around one in 50,000 people have this condition.
His first years were spent in isolation at Auckland’s Starship Hospital, then later, alone in a sanitised room at home.
“When I was little I couldn’t cuddle…or see my brothers, i’d just see them at the door they couldn’t come in unless they wore gloves and masks.”
James had a bone marrow transplant in Australia when he was five, but that was unsuccessful. And doctors say chemotherapy is out of the question because of his failing health, which includes chronic lung disease.
“When the professors told me in Sydney that there was nothing more they could do for him that he’s never going to get better, that made me the decision at that time that I was going to tell James the truth about everything,” says James’ mum Jean.
James says he takes things day by day, which means alternating visits to Taranaki and Starship Hospitals every three months, where he stays for two week stints. Then there is the immunoglobulin antibiotics he injects into his belly at home, which he has done every second day, for the past six years.
Long term there is one long shot.
While researching James’ condition on the internet, the family read about 11 boys in Europe with his condition, who were apparently cured using stem cell therapy.
But for James and his family, heading overseas is a huge and costly gamble.
“He’s not a good candidate for it because his lungs have deteriorated too much…but these boys had a simialr if not worse prognosis,” says James’ dad Garth.
Taranaki Base Hospital agreed to talk to Close Up about James’ condition, but pulled out of the interview after Jean and Garth said they also wanted to talk about stem cell therapy. It said it wasn’t policy to talk about that subject.
Starship Hospital wouldn’t talk about James’ case specifically, but sent Close Up a statement about the use of stem cell therapy as treatment for people with severe combined immuno deficiency syndrome:
“A bone marrow transplant is always the preferred option for SCIDS patients. Gene therapy can help some. But because there’s only small number of people with the condition in New Zealand, it’s not available here.”
While stem cell therapy overseas is a risky option for James – and a hugely expensive one for his family – the mere hope it could give him a better life means they are prepared to try to get him there.
They have been in touch with doctors at Great Ormond Street Hospital in England and are preparing a fundraiser to get him there.
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