From the moment of diagnosis, a sense of isolation begins. The daily routine of school pickups and dental appointments is no longer part of normality. Instead, it’s replaced with treatment plans, blood counts and hospital stays.

Friends and family treat you differently – looks of pity and sadness become familiar. In public, you are known as ‘the parents of the poor boy with that incurable disease’. It can be a lonely existence if you let it.

Your child faces physical and emotional isolation. Fear of contracting infections means that school attendance may be limited and, while other children are making friends and going to play at other people’s houses, your child is invariably unable to manage because of the medication, the wheelchair and the fact that the responsibility is just too much.

Their world becomes limited to the hospital and home with doctors and nurses their main social contact. They rely heavily on us as parents and steps towards independence are extremely limited.

Strangely, life on the ward can be comforting – a sense of ‘all being in this together’. Parents find solace with each other as we truly understand what it’s like to have a sick child. Hospital visits become routine, medical staff become familiar and your child looks forward to the playroom. Slowly a new sense of normality emerges.

Life has since got easier and we are more comfortable with the disease, learning each day about what is normal for Alfie and what is not. 

I felt lost for a long time as our lives were dictated by Alfie’s disease.  As he has got older we have regained some control and setting up Alfie’s Trust has helped turn a negative situation into a positive one.

Alfie’s Trust doesn’t just help our son, but all children and adults with Lymphangiomatosis and Gorham’s Disease.