This is Harry’s story, by his mum Lydia:
“In 2013 when Harry was 2 months old things weren’t right.
He stopped smiling, had developed a horrible cough, was reluctant to feed and slept most the day. His stomach then became very swollen. We had several trips to our GP and we were sent home with my knuckles rapped because I’d stopped breast feeding (this was because I knew he wasn’t feeding and by bottle feeding I could monitor his milk intake).
Things got worse and one morning he’d turned a shade of yellow. I made an emergency GP appointment- thankfully for us our GP took one look at Harry and called an ambulance.
After a week in our local where Harry was treated for a severe chest infection and needed several blood transfusions to keep him stable, we were transferred to Great Ormond St who were finally able to diagnose Harry.
Harry was born with a condition called XIAP deficiency (severe immune deficiency ) which resulted in his body developing a very serious and life threatening blood disease Hemophagocytic Lymphohistiocytosis (HLH).
Harry was treated with high dose steroids and chemotherapy to get the HLH under control. The only cure for HLH is a bone marrow transplant. We were told very early on Harry would need a transplant.
Harry’s first BMT took place when he was 8 months old – this transplant unfortunately failed and Harry relapsed with HLH a few months later on his 1st birthday.
Great Ormond St never gave up on Harry and we went back into transplant when Harry was 16 months old. Thankfully this worked!!
We had a terrible, terrible three years – watching your child go through treatment like that changes everything! My other son was only 2 at the time of Harry’s diagnosis and the emotional scars for him live on.
We were lucky – we got to ring the End of Treatment bell on 30/12/15—We know too many that didn’t!”
Hemophagocytic lymphohistiocytosis (HLH) is a rare but potentially fatal condition in which certain white blood cells (histiocytes and lymphocytes) build up in and damage organs, including the bone marrow, liver and spleen, and destroy other blood cells. HLH most commonly affects infants and young children