'We were very close to losing him' - Harrogate boy with rare condition to undergo his 100th blood transfusion to keep him alive

Blood transfusions are his lifeline and every three weeks, Archie travels from his home in Harrogate to Leeds General Infirmary to undergo the procedure. Though it allows him to manage the condition, it can lead to a build up of iron in his body, which if not treated could start to attack his organs. To break it down, Archie has to have a needle inserted into his leg every night, delivering him medication through a pump whilst he sleeps.

“Nine times out of ten, he takes everything in his stride,” Vicky says. “Occasionally I’ve heard him say it’s all because of my stupid bones. He’s getting to an age now where he does realise he’s a bit different to some of his friends, that he has to miss time off school to come to hospital. It is rare [for him to say that] but it’s at those moments when you have to take a deep breath. He’ll sometimes ask if he has to do this forever and he once asked why I didn't have to have blood…We try to be honest but without scaring him.

"He does understand – because he asked me if he didn’t have his blood would he die? The simple answer is yes. Eventually he’s going to have to manage this himself and he needs to know how important it is to come to hospital and do the things the doctors and nurses tell him he needs to do. But we make it as fun as possible – and he always gets a treat from the shop on transfusion day.”

Vicky first took Archie to see a doctor when he was ten-weeks-old in 2015. “I’d been out walking the dog one day and I was chatting to Archie but not really getting any reaction from him. He had a bit of a glazed look about him.” She was sent to Harrogate Hospital, where tests revealed Archie had a dangerously low Hemoglobin blood count. He had his first blood transfusion that night. “It took about a year to get a diagnosis of Diamond Blackfan Anemia,” Vicky explains, “and in all that time we just continued having blood transfusions. It was a long year. It was really scary. I took him to the doctor that day expecting them to say have this medication and go home and you’ll be fine – so for him to then have emergency blood transfusions was really frightening...Had we left it any longer, I don’t think he’d be here today. I think we were very close at that point to losing him.”

Vicky was left with little choice but to give up work. As well as requiring transfusions, as a baby Archie also suffered bronchiolitis and viral wheezes, requiring hospital care, and had to travel to London on numerous occasions for medical scans. It was difficult to establish a routine, with much of Archie’s first year of life involving trips back and forth to LGI for regular checks on his blood levels – and often, a transfusion.

“I spent a lot of time just looking at him and thinking is he pale? Just panic all the time,” says Vicky, who also lives with husband Dean and daughter Holly, nine. “In that first year, we had been told they suspected it was DBA so I did join a support group on social media. But when we were told that was what it was [after genetic testing], even though you kind of prepare for it, you’re still sad. It’s still heartbreaking. I just went home and cried.”

That night, Vicky wrote her first post in the group run by DBA UK and has found the charity to be a great support. Since then, the Flintoft family have worked to raise awareness of the condition and to help promote blood donation. They also established Archie’s Army to raise funds to support Archie through his specialist care and to help DBA UK with its work to support families and fund research.

Vicky, who has just returned to employment, working as a teaching assistant, says: “Archie s a bright and vibrant child who, when feeling well, does not let life get him down. He is a huge fan of superheroes, and would love to become one when he grows up. To those who know and love him, he already is.” To donate, visit gofundme.com/f/rnrvyu-archies-army