I am the mum of a 2 years old boy who has severe haemophilia A. No family history but we know now that I am a carrier.
We are lucky enough to be in that part of the world where we have access to prophylaxis every second day to prevent any bleeds. So far we have had a couple of bleeds, the first big bleed shook our world a little bit as our little man couldn’t walk for few days.
Haemophilia has changed and shaped our world. At first, I think we were a bit in denial how we will stop haemophilia to rule our world. We were naively thinking that everything will be sorted after a catheter and some treatment. The reality is much more challenging: bleeds, constant worries and we had to become strong advocates for our little man. We are just learning to live with it, one day at the time. We have lost few friends along the way but we have gained new friends on the way. It made us realise how precious our lives are and we are now learning to surf the waves of haemophilia, sometimes we fall but we always get up again.