Hope for Harrogate boy with incurable blood condition
Archie was just ten weeks old when he had his first blood transfusion
Last updated 18th May 2021
A mum from Harrogate is hoping the story of her son’s illness will raise more awareness of his incurable blood disease.
Five-year-old Archie has a rare bone marrow failure disorder called Diamond Blackfan Anaemia (DBA) - an extremely rare condition that effects approximately 1000 people worldwide.
It is where bone marrow doesn’t create the red blood cells needed for a person to survive. There is currently no cure for the condition.
The disease is usually diagnosed before 12 months of age. DBA patients may need treatment ranging from monthly blood transfusions to regular steroid treatment, and in some cases bone marrow transplant.
Archie's mum, Vicky Flintoff, realised something was wrong with him while she was out on a walk and he didn't seem very reactive to her voice.
She took him to the doctor who advised she go to Harrogate hospital, where they found his haemoglobin level was at 22 - a healthy person would have a level of 140.
That day he had an emergency blood transfusion at the hospital and was later transferred to Leeds General Infirmary.
Vicky, said: "It was devastating when we found out. It was so confusing and scary. I'd never even heard of DBA. All of a sudden I had this tiny baby which needed to have these blood transfusions to stay alive.
"He's at the age where he is starting to ask questions and he wonders why he has to miss days off school to go to the hospital and his friends don't.
"He does occasionally fight back 'I don't want to go get blood' so I've said to him what will happen if we don't.
"I've never told him this, but one time he said to me 'If I don't do this I'll die' and so I had to say 'yes, so we'll go won't we?' and he agreed.
"I'm used to the hospital appointments and treatments and I think I'm fine. But then he'll say something like that and that will affect me at that point.
"It's hard but I just have to deal with it for him."
Archie needs regular blood transfusions (currently once every 3 weeks) to keep him alive.
But a side effect of blood transfusions is a build-up of iron in the body which, if not treated, starts to attack the organs, including the liver and heart, and would ultimately be fatal.
To break the iron down, Archie has to have a needle inserted in to his leg every night which is attached to a pump. This provides medication to him overnight whilst he sleeps. Although this breaks the iron down, it hurts and also causes complications of its own.
Archie and his family regularly travel to London to check the iron levels in his body and to make sure his liver and heart aren't being affected by the transfusions.
These trips can take a few days, costing the family between £800 and £1000 each time.
To help cover the costs the family had previously organised fundraisers, but the pandemic has put a stop to that.
Instead, King Edward's Drive Post Office in Bilton and The Red Box have announced they will be supporting Archie's Army.
For every £1 donated the Post Office, they will double it to £2 and The Red Box will then double that to £4. They have already raised £1000 since they launched the appeal on Tuesday (11 May 2021).
Vicky, added: "We just need to say a huge thank you to everyone who has been helping us. Some fundraised last year and are continuing to fundraise for us."