Archie's story
Archie is a typical teenage boy. He loves his Xbox, TikTok, and has a real interest in cooking which he hopes to take for GCSE. Archie is very sociable with lots of friends at school but also loves spending time at home with his family. He’s a big Spurs fan, enjoys playing hockey when he is well enough and also loves watching Friends on TV. Archie loves his two black Labradors called Frank and Daisy.
Back in 2013, Archie, now 14, had two strokes within nine weeks of each other. No one had any idea what caused them, but certain levels in his body never quite sat right. From 2013 to 2018 was a roller-coaster ride for Archie and his family. He was in and out of hospital, constantly changing medication, suffered exhaustion and muscle aches to the point that he couldn't walk, and they still had no idea why.
Rare diagnosis
Finally, in 2018, Archie was diagnosed with a very rare genetic disease called DaDa2, a condition that causes stroke-like episodes, inflammation in the body and immune system problems. At that time, there were only 150 people worldwide who suffered with the disease. Archie’s family managed to get the funding for an immunosuppressive injection to help control it. His brother Ralph, 12, was then also diagnosed with DaDa2.
Transplants are not just for cancer
Archie had a good couple of years health-wise until 2020. He has neutropenia (meaning a very low immune system) which means he gets constant mouth ulcers, often the size of a 5p piece, and even a tiny spot on his body runs the risk of getting infected resulting in hospital stays with intravenous antibiotics.
Now, with his immune system failing, a bone marrow transplant is the only option for Archie. Unfortunately, no one in his family is a match, meaning Archie is now searching for an unrelated donor.
His mum Hayley explained, “As a Mum to Archie, all I want is for my son to have his life back. But I also want to raise awareness for every single person needing a transplant. Until you're in this position, it's hard to imagine what it's like.”
“When you hear bone marrow transplant you instantly think it's cancer, but as we now know, there are a number of blood and genetic diseases that a transplant can cure. Archie takes it in his stride, but like most children he doesn’t see the danger and risks - and why should they, they're kids. For me as a mum, it's breaking my heart, but we will get through this.”
How you can help
If you are aged 17-55 and in general good health, you can join the register by clicking the red button below. You could be the perfect match for someone like Archie in need of a donor.