Cameron's story - Jeans for Genes

Cameron's story

Eight-year-old Cameron has haemophilia, a genetic disease in which your blood doesn’t clot properly. He has to be very careful not to injure himself, either through his skin or inside his body, and receives regular injections of blood clotting factor.

Cameron was just 15 months old when he woke one morning and was unable to walk. His mum Kirsty rushed him to A&E, where doctors found that levels of the blood clotting factor, factor VIII, had plummeted. A few weeks later further blood tests confirmed that he had severe haemophilia.

Haemophilia is a sex-linked genetic disease carried by females, with a 50/50 chance of passing it onto any sons they have. While the news was difficult to take on board, it was something that Kirsty had already thought of.

‘I had told doctors that my father had moderate haemophilia and asked if Cameron was affected … as my blood levels were normal they didn’t think it was likely to affect him. When I was told Cameron had haemophilia I knew I just had to cope with it, and as a single mum I was coping alone. I started on a rollercoaster ride of emotions, appointments and treatment.’

Cameron was immediately referred to Great Ormond Street Hospital for specialist care, where Kirsty was taught how to manage her son’s condition on a daily basis. When Cameron was 20 months old, he had a port surgically inserted under his skin to make it easier to inject factor VIII every other day. The port was removed in February 2012 and he now has the injection directly into his veins.

‘The port was amazing, it really improved our lives when he was younger. Managing his condition well means he can live a normal happy life. We have had challenges. He had a bleed after he injured his thigh – the result of a push in the playground – and he broke his arm in 2008 while playing football in the garden. I can’t panic, because he will panic. He knows his mum is as cool as a cucumber.’

Despite regular injections of blood clotting factor and frequent trips to A&E for bleeds, Kirsty makes sure her son lives a full and active life. He loves playing football, swims and enjoys soft play parks.

‘Cameron is a very active little boy, he’s happy, always positive and he has a wicked sense of humour. I’ve never wrapped him up in bubble wrap. I’ve always encouraged him to do sports, go on his scooter, and I want him to find his own barriers safely. My only rule is no rugby!’