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Brighton haemophiliac brothers help others in new book
9:21am Wednesday 1st January 2014 in News
Three-year-old Archie Inns looks the picture of health but both he and his little brother are suffering from a rare and incurable condition.
Both youngsters have been diagnosed with a severe form of the bleeding disorder haemophilia.
The condition means their blood cannot clot properly and so they are at increased risk of internal and external bleeding that can be difficult to stop.
Despite the diagnosis, Archie is just like most boys his age, and enjoys bike riding and going to the park and beach.
His parents Stuart Inns and Jodie Cullen, from Saltdean, Brighton, are aiming to help others by featuring in a new book.
Came as shock The book, called Buddies Book, provides a wide range of information as well as stories and experiences from families around the country.
Archie was diagnosed at ten months, while his brother Coby, one, was tested shortly after he was born.
Ms Cullen said: “Haemophilia is a serious lifelong condition but with the right treatment and support children and adults can lead normal lives.
“However, we know what a shock it can be finding out your child has an incurable condition, and any informa- tion you can get from people who have been through it is a real help.”
In the book Ms Cullen described the moment Archie was diagnosed with severe haemophilia A.
She said: “It came as a shock as we weren’t aware of any family history. I’ve since found out that I was the carrier, but that’s all I know.
“At that point we didn’t fully under- stand the extent of Archie’s condition.
“We thought it wasn’t that serious and that he’d just need a bit of medica- tion.
“It wasn’t until everything was explained to us that we fully understood the implications of his diagnosis.”
However the condition has become manageable, particularly when Archie had a device installed under his skin that made it easier to give him his medication.
Coby hasn’t needed to have any treatment so far and had no bruising, although his parents keep a close eye on him.
The book, produced with the support of pharmaceutical company Novo Nordisk, which makes haemophilia medicines is distributed to specialist NHS haemophilia centres across the country, and available free on request to anyone affected.
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