Meet the brave family battling the rare and incurable bleeding disorder haemophilia

The inherited disease means when Cassius, 12, and Jonny, seven, are injured, their blood does not clot properly and internal bleeding could be fatal.

When Cassius cut his mouth as a baby, it led to 14 hours of continuous bleeding and Jonny had to spend three weeks in hospital after a knee injury.

However, the boys are injected every other day with life-saving medication and they refuse to let the disease stop them living life to the full.

Now proud mum Hannah Lister is embarking on a campaign ‘No booze, no bruise’ to raise awareness of the condition by giving up alcohol for a year.

Hannah, who will raise money for The Haemophilia Society, said: “Cassius and Jonny often experience internal bleeding. Where most kids would fall over, bang their knee and it would bruise, they bleed internally for much longer.

“It can be extremely worrying. You can’t prevent everything but you have to do your best to be vigilant and try to prevent as many injuries and accidents as possible because you know what will follow on from that.

“The boys are both at risk from bleeding inside the skull from even minor head injuries, which if left untreated can be fatal.”

When Hannah became pregnant she knew if she had a boy, there was a 50 per cent chance he would have haemophilia because her own father suffers with the inherited disease.

Cassius, a pupil at Winton Academy, was diagnosed aged eight months and Jonny, a pupil at Hill View Primary School, was diagnosed at birth.

Hannah, who runs a local support group, explained: “The biggest change in the way I manage my two sons’ haemophilia came when Cassius knocked out his two front teeth during a family holiday in Egypt. After four days of bleeding and with treatment waiting for us at the centre when we landed, we were not allowed to fly home for another two days because of the bleeding. It was a very frightening experience for us all.”

But treatment has now advanced and the boys are able to receive a factor VIII at home, which adds a protein that helps the blood to clot every two days.

It means rather than constant hospital visits, they can do the things most other children do like play a variety of sports and take part in school trips.

The 38-year-old PA added: “It feels wonderful to be in control and I feel I’ve come so far from the helpless, hysterical mess I was during the first bleed.

“I’m extremely proud of the boys. They amaze me every day with their resilience and motivation to succeed at everything they do without ever complaining.

“We have been so supported over the years and the future is looking great for us. I feel I want to be able to give back now. Giving up alcohol for an entire year is going to be incredibly tough for me but it's nothing compared to everything they have been through.”

To support Hannah go to justgiving.com/fundraising/Hannah-Lister6 and to follow her video diary go to https://m.youtube.com/channel/UCmEFOBuxJwxsN__91QfrFew

For more information about the condition go to haemophilia.org.uk