My son has recently been diagnosed with xxyy syndrome, an extremely rare chromosome disorder that will have a life time affect on him. I would like to raise funds and awareness for this condition.
After months of finding out and worrying I think I have finally been able to get my head around it. I'm not looking for sympathy or concern but I feel that it's my responsibility to raise awareness. My son Joey was diagnosed with XXYY syndrome back in August last year. This is an extremely rare chromosome disorder that will have a life time affect on him, this affects a boys speech, behaviour and physical development, they also have very low or no testosterone which means that they are unable to have children. Children with this condition suffer with symptoms the same as ADHD, Autism, bipolar and OCD as well as lots more. We have had to see a specialist in London as even a lot of doctors here don't know much about it. Joey amazes me every day but he also has daily struggles. I have recently been in touch with a few people from across the world who have informed me that there is a fundraising campaign to raise money for awareness and research and after a lot of thought I have decided that I am going to climb the o2 (any one that knows me will know I can't even climb a ladder because I'm scared of heights, but I want a challenge) I would appreciate any donation and every penny will be going to the XXYY syndrome fundraising campaign