Carreen, from Surrey, got in touch with THS to let us know that activities from THS have been influential in her son, Henry, finding a passion through sport in archery. He first tried it out, along with other sports, at THS events. ‘Finally, after covid, he is now a member of a local club and regularly goes shooting at the weekend. I’d say it was thanks to haemophilia! And the Haemophilia Society.’
Henry, aged 12, was diagnosed at six months old. The diagnosis came completely out of the blue for the family. Henry had unexplained bruising, which Carreen regularly asked her doctor and health visitor about, but was told it was nothing to worry over. It was only severe bruising to his ribs that led one health visitor to suggest that the family seek more help and testing, and within days they received a call firstly to say that there was something wrong with Henry’s blood, and then the next day, that he has haemophilia A.
While he was very young Henry was treated on demand and the family felt quite relaxed about his condition as most bruising had been superficial. But just after his second birthday, while he had a very bad ankle bleed, the family was told that Henry had developed an inhibitor.
‘By the time he was starting primary school Henry was having bleed after bleed, and they couldn’t control his inhibitor,’ says Carreen. ‘He had had a port infection, sepsis, and unsuccessfully tried immune therapy. He spent nearly a year in a wheel chair and we were going to convert a downstairs room for him to make looking after him easier.’
Then, having been THS members for many years, the family heard through the charity that some new trials were taking place. The family became one of the first to volunteer to trial Emicizumab under the care of Great Ormand Street.
‘Emicizumab changed our lives. It’s not perfect, and sometimes Henry has little niggles, but now he has treatment once a week and you wouldn’t know he was any different from any other child. He has needed lots of physio, to build up strength in his body, but finally in year 7 at secondary school he’s drawing level with his peers and absolutely loves PE lessons,’ says Carreen.
Carreen feels that Henry has matured quickly because he has had to deal with haemophilia all his life. He understands his body and its limits, and when it’s safe to take a risk or not. ‘Sometimes he pushes himself to do things, but other times he says no because the knows he then won’t be able to walk for three days,’ says Careen.
Henry is also open about his condition, happy to chat to other children with or about haemophilia. In the past he has led assemblies at school, and by unusual coincidence, his current school already has a child with haemophilia, so the staff are happy to listen to Henry and what he says he’s able to do.
In fact, Henry and his family have attended lots of exciting events and experiences thanks to his haemophilia, and Henry likes to remind his big sister that she would never have had the chance to try flying a small plane at one event if it wasn’t for him and his condition!
The family all try to have a very positive outlook. They even have a long-standing joke that they will send Henry to Las Vegas with £100 when he’s 21, as he seems to have hit the jack-pot so many times with his rare condition and having an inhibitor which, rarely, didn’t respond to therapy!