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Hello ☺️
So my son (13) was diagnosed with CML 21st January this year so this is all new to us. Apparently CML in someone under the age of 20 is unusual so I'm not really sure where to turn to for advice. Stumbled on this site via Google so hello and if anyone else has a child with CML I'd be glad to know how you're managing to keep it all together 🥺

Hi Hazel,

I'm sorry to hear about your son's diagnosis. CML is unusual in kids, but not so rare that it's totally unheard of. The average person with CML gets diagnosed in their fifties. I do know a few people who are well into adulthood now but were diagnosed as a young child and are doing just great these days and living a fully normal life. Yunus is one of them, and you can read a bit about his story here: https://eurobloodnet.eu/news/712/rare-disease-day-2026-yunu-s-story - he's in his mid twenties now.

Hopefully someone with shared experience will reply to you soon, but I would also point you to a Facebook called "Children with CML". There are several hundred in that group, and I think you might find it very helpful.

David.

Thanks for your reply David, unfortunately I don't have Facebook ...I have Instagram and X though so if anyone hears of any groups I'd love to be pointed in their direction! We've just started this journey so any information and experiences help as I feel it's better coming from people living in the same type of bodies as my son. He's at that weird age where he wants to be treated as a grown up but also has fun doing the silly stuff with his younger siblings and family members 😂
He's had enough of adults with clipboards walking in front of him, talking at him then leaving a pamphlet for him to read, if I can get information into him in a way he reacts to it will help the both of us.
I admit I've been a lurker on here for a couple of weeks before having the courage to sign up and post...also on the MacMillan pages too. The experiences talked about here are invaluable. Thank you

Thanks for your reply David, unfortunately I don't have Facebook ...I have Instagram and X though so if anyone hears of any groups I'd love to be pointed in their direction! We've just started this journey so any information and experiences help as I feel it's better coming from people living in the same type of bodies as my son. He's at that weird age where he wants to be treated as a grown up but also has fun doing the silly stuff with his younger siblings and family members 😂
He's had enough of adults with clipboards walking in front of him, talking at him then leaving a pamphlet for him to read, if I can get information into him in a way he reacts to it will help the both of us.
I admit I've been a lurker on here for a couple of weeks before having the courage to sign up and post...also on the MacMillan pages too. The experiences talked about here are invaluable. Thank you