'My girl can’t walk after a rare disease robbed her of her future – now I’ve helped raise £75k to help find a cure'
TWO devoted mums have raised £75,000 to fund human trials of a potential cure for the cruel disease robbing their kids of a future - and become best friends in the process.
After her son’s diagnosis last year, former teacher Amy, 41, of Ware, Hertfordshire, co-founded a charity called H-ABC Foundation UK with another mother. Aged one, he was diagnosed with hypermobility, where the joints are unusually flexible and referred to a physiotherapist. “He’s not going to die anytime soon but the search for a cure is desperate, because it will help to slow down the impact.
Amy said: "Like Frankie, Ali's daughter Aggie was the perfect baby until about eight months, when she began struggling to sit up and a lot of their patterns are the same."Frankie's still in nappies, but she will phone me and encourage me to toilet train him. She pushes me in a good way and tells me he can do it."She wanted to read it to me because she was so proud, but also to show me what Frankie is capable of. She’ll say, ‘Look how brilliant our children can be.
“This disease is like a ticking bomb. It robs children of their abilities. Every day Aggie is losing skills. “She wrote a beautiful piece to accompany a picture of a rainbow which I shared with Amy straight away. I was so proud of how beautifully it was written – describing the colours of the rainbow.
Admitting that she was "utterly lost" for a few years after Aggie’s diagnosis, Ali has also found Amy's friendship invaluable."When we first found out about Aggie, I remember going on holiday and thinking that if the plane went down, it would be alright because we were all together and I was so scared of what the future held."Hearing what the charity is doing and what the hospital in Philadelphia is doing, I know that there is hope and that doctors are working hard.
"It actually took three weeks from writing it to posting it and once I did, Amy was the first person to phone me and say, ‘I know how it feels.'
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