A short video explanation of the effects of ALD and possible treatments available to the effected patient.
Ryan and Ethan Caulfield McCormack from Tramore, Co.Waterford, were recently diagnosed with Adrenoleukodystrophy (ALD). ALD, is a deadly genetic disease that affects 1 in 18 000 people. It most severely affects boys and men. This brain disorder destroys myelin, the protective sheath that surrounds the brain’s neurons — the nerve cells that allow us to think and to control our muscles. ALD causes relentless progressive deterioration to a vegetative state or death, usually within five years. It knows no racial, ethnic or geographic barriers.
Prognosis for patients with childhood cerebral X-ALD is generally poor due to progressive neurological deterioration unless bone marrow transplantation is performed early. Ryan is currently in the US undergoing the process for a bone marrow transplant which is due to be performed on the 26th December 2012.
Ethan is currently asymptomatic due to his age (childhood ALD only becomes symptomatic from age 5 generally) and will become a candidate for a bone marrow transplant when his meylin sheath begins to deteriorate. There is presently no cure for ALD.
We are currently raising funds to cover the remaining costs of the transplants (1.5 million a head, some of which is being paid by medical insurance). We, as a community have vowed not to have either boy denied treatment due to lack of funds. Any donations, big or small are appreciated.
Caroline, Jimmy and family would like to thank everyone for the overwhelming support they have received since the boys’ diagnosis.