My wonderful friend Lora and her husband Rich had a beautiful baby boy Alfie last year who was diagnosed with Alpha – 1 when he was 8 weeks old.
I’ve copied this information from Lora’s justgiving page to help explain more about Alfie’s condition. Alpha 1 deficiency is a genetic condition and Alfie produces a different form of protein in his liver. This means proteins become trapped in the liver and are not being carried to other parts of the body as it should. This can lead to liver damage and lung damage in later years.
The condition is classed as a rare disease as it is rarely tested for so is under diagnosed. There is no cure or treatment for this condition and it will effect Alfie for the rest of his life. He will be regularly monitored to ensure his condition is stable.
As soon as Lora shared the link to the fundraising event and I saw Louise’s comments I knew this was a mission I had to take part in. This charity supports families that are dealing with this condition – it provides help and support at the toughest times as organ transplantation is required. If you can – please spare a few pennies to sponsor me and my friends – I cannot think of a more worthy charity. Alfie is a very special little man indeed who is loved so much.