“I’m Alessandro. I’m only one and a half, but I really need a blood stem cell donation. At the moment I’m on a trial medication but there’s no great evidence to show how long this might be effective so I need to find the matching donor by the end of November. Can you help?
I’ve been driving my parents crazy since the very beginning as I was born really early. All the doctors were convinced that I would not make it, but I fought against a never-ending number of medical complications and here I am today.
Things were finally looking up until this August. I was enjoying my very first holiday with my family when I fell ill again. Mum and dad hurried me back to London to undergo a number of medical checks. Two weeks later I was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH), a rare genetic disease that affects only 0.002% of children.
It’s really scary to think that 50% of children diagnosed with HLH will not make it through the first month. A third of children will develop irreversible deficiency of their neurological system. The only hope I have to fight the disease is a blood stem cell donation.
We tried to find a match in my family but didn’t have any luck so I’m now relying on finding my magical match in a stranger. At this point, no-one in the whole world who has registered as a potential blood stem cell donor has been identified as a match. Could you be my genetic match? My tomorrow relies on people like you registering as potential blood stem cell donors today.
At the moment, I'm on a clinical trial. Would you believe it that I am the first baby in the UK to ever be treated with this medication? However, we don't know how long this experimental drug will be effective. The doctors have told us that I’ll need to find a blood stem cell donor by the end of November which is just five weeks away.
I may not have been on my planet very long, but I really want to live. Can you help me have a future?”
Register as a potential blood stem cell donor today and give hope to little Alessandro and anyone else in the world needing a blood stem cell donation.
If you’re already registered, please share Alessandro’s message and don’t forget to return your swab kits.