Adrenoleukodystrophy, or ALD, is a deadly genetic disease that affects 1 in 17 000 people. It 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. It knows no racial, ethnic or geographic barriers.
The most devastating form of ALD appears in childhood, generally between the ages of four and ten years old. Normal, healthy boys suddenly begin to regress. At first, they simply show behavioral problems, such as withdrawal or difficulty concentrating. Gradually, as the disease ravages their brain, their symptoms grow worse, including blindness and deafness, seizures, loss of muscle control, and progressive dementia. This relentless downward spiral leads to either death or permanent disability, usually within 2 to 5 years from diagnosis.
We are asking for a signature to petition for ALD to be added to the Newborn Screening both in the State of Ohio and nationally. These children can be saved if parents and doctors are aware of the disease and can monitor it with MRI's early on.
All three of my sons have Adrenoleukodystrophy (ALD). As of today they are healthy thriving young men. In 2006 Dylan and Owen received bone marrow transplants. Jacob remains asymptomatic . Tragically my nephews Billy and Chad Barley lost their life's to ALD. It was then brought to our attention to have our boys tested. If ALD newborn screening was available years ago Billy and Chad would be here with us today.
It is Extremely Crucial to add ALD to newborn screening. My boys are proof that early detection saves lifes. Imagine if a child you love, your son, brother, grandson, or your nephew was unexpectedly diagnosed with Adrenoleukodystrophy and it was too late. All children deserve a chance at a healthy life.
Thank you for helping me stand up for Billy and Chad and all ALD boys.
For more information about ALD please visit www.StopALD.org www.FightALD.org