Photo shows us with Dr Toro & Dr Gahl of the Rare un-diagnosed diseases research unit - NIH - in Bethesda, Maryland USA. We were presented to 100 students and Doctors because ....we are 'RARE'!
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'.
We have just returned to Ireland after an intensive week of tests and evaluations in NIH. An amazing place. We were privileged to be accepted onto the research programme there. That was amazing.
This was a HUGE opportunity for diagnosis. the best hospital in the USA were 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 were in urgent need of medical help.
But we had to raise funds for Bethesda for three people. We needed to bring a carer/nurse to help us. We needed funds to pay the carer/nurse, to hire powered wheelchairs whilst there, and quite a few other things vitally necessary.
This was 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 was really wonderful and offered much hope.
we never reached our funding target and we have to continue fundraising. We are enormously grateful to those who have supported us. We needed your help. As pensioners the trip was financially very difficult. so we'd still like to reach the target.
we are now exhausted, but very uplifted by the great NIH and doctors and staff there. They were wonderful.