Demand ALD to be added to Newborn Screening!
- by: Darlene Halverson
- recipient: Ohio Governor John R. Kasich
I come from a family of six girls. Females are carriers of ( ALD ) Adrenoleukodystrophy. My family had no clue of this disease until my nephews were diagnosed with it . By the time they were diagnosed it was too late for any treatment. It is so heartbreaking that they lost their vibrant young lives to this monster. It is also at this time my family was alerted to have all of us girls and our children tested to see if we too were carriers.
We found out that just my sister Loretta and I are carriers in my family and I passed ALD on to all three of my boys. Now,with us knowing that my boys had this at a early age we were able to monitor them with regular MRI's. In April 2006 Owen's MRI showed damage to the myelin sheath, an insulating membrane that surrounds nerve cells in the brain. August 4 , 2006 Owen received a 4 out of 6 match double cordblood transplant. Just weeks after Owens transplant we were told that Dylan would need one too. On Oct. 4 , 2006 Dylan received a 6 out of 6 match live bonemarrow transplant.
Today my boys are doing Great and they are Proof that EARLY detection Can save these boys. Jacob's MRI's remain clean and he remains asymptomatic. It breaks my heart that Billy and Chad had to be the Screening for my family. Please , I'm begging you to help me get ALD added to the Ohio newborn screening panel. No family , No child should have to go through what my family has been through.
Thank you all who have already signed and have supported me,listened to me rant on about ALD . I just don't want another family to lose their child.
♥ It takes Each of us to make a Difference for ALL of us ♥
~ Darlene
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.
- For more information about ALD please visit www.StopALD.org
Dear Governor John R. Kasich
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.
Sincerely,
Darlene Halverson
For more information about ALD please visit www.StopALD.org
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