In January 2018 our youngest son, Alfie then age 18 months old was diagnosed with severe Haemophilia type A. This is a rare genetic bleeding disorder and something we knew nothing about. From diagnosis things moved very quickly, Alfie had an emergency operation to drain a large haematoma on his forehead which required a stay on the Oncology and Haemotology ward also known as ward 6. Whilst Alfie was in hospital Martin and I felt like we were on a crash course on Haemophilia! Alfie then needed a synthetic factor VIII replacement. This is done intravenously. Soon after his first operation he had another operation to fit a port a cath fitted and he still has this today. His injections and any blood tests are done through this port. The days following his second operation he developed an inhibitor. This meant his body was fighting the synthetic factor VIII therefore it wasn’t working and so he began immune tolerance therapy. This meant exposing his body to high doses everyday. This meant daily trips to the Children’s Hospital until we were able to do the injections at home. But even then he needed weekly blood tests which have gradually become less and less over time. We do constantly have to look out for bruising, bumps and swollen joints and a raised temperature. Alfie’s condition is life long and he will continue to be cared for by the amazing doctors and nurses at Sheffield Children’s Hospital until he is an adult where his care will move to the Hallamshire. 

Thanks for taking the time to visit my JustGiving page.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.