Photo shows us campaigning last year in Dublin , Ireland for Disability Rights. But underneath those smiles lay a harsh reality- we have a degenerative neuro-muscular disease - getting worse every day.
We are identical twins, age 66 with a rare unknown degenerative neuro-muscular disease, living in the Republic of Ireland. We have been searching years to know why our bodies are 'disintegrating'.
Now we have been invited to go to a Rare Undiagnosed diseases research unit in Bethsada Medical Centre , Maryland, USA.
This is a HUGE opportunity for diagnosis. the best hospital in the USA are going to help us. Real HOPE.
They may also discover a way to treat our disease, arrest it or delay further deterioration. We already have swallowing, breathing and speech difficulties. We are in urgent need of medical help.
But we must raise funds for flights to Bethsada for three/four people. We need to bring a carer/nurse (if not two) to help us. We needs funds to pay the carer/nurse, to hire powered wheelchairs whilst there, and quite a few other things vitally necessary.
This is our last chance to discover what our disease is. our last chance to discover possible treatment and be advised by the top medical people in the world.
And we will be contributing to science and medical advances too. So for many other people as well as ourselves this trip is really wonderful and offers much hope.
please help us get to America. We have not much time...we should fly at the end of October.