Jersey boy 'first under 12' in haemophilia trial
- Published
A Jersey boy has become the first child under 12 years old to take part in a new haemophilia treatment trial, health bosses have said.
Charlie is taking part in a new injection trial by the children's hospital, Great Ormond Street, for the condition that prevents blood clotting.
The seven-year-old has suffered with a rare form of haemophilia since birth.
His mother, Hannah, said the trial was changing his life.
She said: "It will give him a lot more independence and be able to go on holiday with school trips and do things like that so it's not something that we saw coming this early in his lifetime at least. It's really positive.
"I'm now in a position where I can push him and want him to try new things and do new things, whereas before I probably was holding back a little bit."
'Bruising and painful bleeding'
Great Ormond Street Hospital said the treatment had been successfully trialled in patients over the age of 12 with haemophilia A and B and now researchers were testing the treatment in boys under 12 with a rare complication of haemophilia B.
It said: "Children with haemophilia often suffer from nosebleeds, bruising and painful bleeding into joints and muscles, and skin that bruises easily.
"Without treatment, symptoms are likely to worsen as children get older, leading to severe joint paint and the need for walking aids alongside increased hospitalisation.
"Currently treatment for this includes an injection every two days via a device called a portacath that allows medicine to be delivered close to the heart."
'Result for tiny island'
Charlie has needed a portacath since a young age.
However, the new trial involves a daily injection via a pen injector that would allow children to live much more like their peers, with an active life into adulthood.
The hospital said the first patient to receive the new drug on the trial was Charlie.
"If successful, this treatment could provide an attractive option for the 2,500 men and boys in the UK with severe haemophilia A and B that need regular preventative treatment," the hospital added.
Hannah said: "He was the first person within his age category to start this treatment so that's a real result obviously coming from a tiny island."
Great Ormand Street Hospital's Dr Mary Mathias said the trial was going well.
She said: "This is a new treatment which is a trial medicine at the moment and so instead of being given into a vein it's given under the skin so it's the same kind of process as giving insulin.
"It's amazing to see just his level of confidence and the other side of it is not bleeding [and] not being in pain."
Although he still has to be careful, Charlie is about to take part in activities he was unable to beforehand such as football camp and other outdoor sports.
Doctors said Charlie would continue on the trial for at least two years.
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- Published21 July 2022
- Published14 December 2017