A Bracknell mum has described the ‘terror’ of watching her five-your-old son with a genetic disorder endure sepsis, lung collapse and multiple surgeries.
Ryan Brissett can’t go near sources of fungi or bacteria like sawdust, cut grass or wet mud due to a rare condition called chronic granulomatous disorder, which prevents white blood cells functioning properly.
His mother Hannah Hunt, 27, has been searching for a blood stem cell donor since Ryan stopped breathing aged just seven-weeks and was rushed to intensive care, where his condition was discovered.
“It was horrendous, I’ve never been in anything like that in my life and to see my child, as a first-time parent, going to something like that is terrifying,” said Hannah, who had to take Ryan to intensive care for a second time last year.
In his short life Ryan has experienced countless hospital visits and has been restricted in where he can go outside.
As his language skills have developed, he has begun asking questions about if and when he will get a donor, which Hannah feels powerless to answer.
“It’s very upsetting because sometimes he can be really sad about it. It can be overwhelming.
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“We live a completely different life to the normal family. We’re exposed to hospitals, medication and searching for donors, and it can have a massive strain on us.
“I would love to give him the answer that we all want him to have, but we don’t have a donor so we have to be careful and we hope that day comes when I can actually tell him that we’ve got one.”
“Life would be very different for us. It will be like a second chance at life.”
Only one in three patients in need of a blood stem cell donor, which includes children like Ryan or people with blood cancer, will find a matching donor within their family, according to the charity DKMS.
That means 66 per cent of patients have to rely on the generosity of strangers registering with charities.
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But registrations are down 50 per cent compared with pre-pandemic numbers, according to the charity.
Donors from minority ethnic backgrounds make up 13.1 per cent of the UK stem cell register, meaning it is even more difficult for people like Ryan to find a donor because ethnicity can determine whether stem cells are a match, according to DKMS.
If you’re 17 – 55, in general good health, and would like to be a donor, you can take the first step by going to dkms.org.uk to register.
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