Ooops, I’ve managed to sign myself up to jumping out of a plane!

BUT this is nothing compare to what Jayne and all of those at Amy and Friends, those who have and live with someone with Cockayne Syndrome do on a daily basis.

I only met Jayne and learnt about Amy and Friends, Cockayne Syndrome, their Conferences, their Clinic last August. And I’m blown away. So blown away that when Jayne needed someone to jump out of a plane it seemed the least I could do.

Those who live with Cockayne Syndrome have to endure the daily, lasting pain of how devasting a disease this can be and the impact on their lives.

If the children can be in constant pain and still smile, I’ll jump out of a plane for them.

If parents can watch their child/children lose skills they once had, I’ll jump out of a plane for them.

If siblings can watch their best friends stop having the strength to play with them, I’ll jump out of a plane for them.

Jayne and Amy and Friends take 10 children a month to Guy's and St Thomas' Hospital for their clinic, to get the best care they can get.

They put on a conference every year to give the children lasting memories, families a chance to meet and share experiences, happy and sorrow, and get the chance to grieve.

And they actually bring scientists together to share knowledge and look at the best practices to help these children.

It is all funded by donations…. So, please spare what you can and not only sponsor me to jump out of the plane, but do it for all those children with Cockayne Syndrome, for all their families, and to keep the research going into rare genetic diseases.

Thank you,

Peter