In Jan 2018 my youngest son, Alfie, then age 19 months was diagnosed with severe Haemophilia type A. This is a rare genetic bleeding disorder that affects about 1 in 5000 male population. This was a shock diagnosis and resulted in an emergency operation a few days later and then a few weeks after this another operation to have a port a cath fitted. Both his stays were spent on ward 6. After Alfie’s 2nd operation he developed an “inhibitor” which basically meant his body was rejecting the treatment he was receiving. So he began ITT(immune tolerance therapy) this meant high doses everyday. Which in turn meant a trip to the hospital everyday. This carried on until I was able to do the infusions for Alfie at home. Then our visits were once a week, gradually reducing to once a fortnight and now they are once every 3 months. Alfie now has infusions every other day but sometimes requires extra infusions if for example he bumped his head or fell off his bike. Alfie’s next hurdle will be to have the port a cath removed and the injections done directly into his veins. Alfie’s condition is life long but his prognosis is good. The implications of Alfie’s diagnosis stretch through the family, I have now been diagnosed with mild Haemophilia and also my daughter, Holly could be a carrier like myself. She wont know this until she can consent to genetic testing. 

I have been motivated to make ‘the jump’ by another families story. I only know of this family through a close friend but their son is currently on ward 6 receiving treatment for leukaemia. Mum, Jo, is also doing the jump and I thought if she can do it with everything that is going on in her family’s life then I can as well! 

I will tell you now that this is NOT on my bucket list and I am absolutely terrified! And I have never done anything like this in my life!  But this is nothing compared to what the children on ward 6 have to go through. Please help support this amazing cause! 

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