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adrenoleukodystrophy

susie

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I am a 26 year old mom that has a 7 year old son with ald. Dr. Moser and Dr. Raymond from the Kennedy Kreiger Institute and John Hopkins Hospital took care of my son from the ages of 2 through 5. On Christopher's last trip to see them I found out that I as well have problems caused from the ald. I was told that there is a form of ald that affects 20% of female carriers. I have muscle spasims, memory loss, and vision loss. So for all the female ald carriers do not belive someone that says we do not have symptoms of ald as well. Enough about me, on to my son. I found out that my son had ald when I was 16 weeks pregnant with him. The doctors said that with the high levels of saturated fat that my son would be born a vegetable and would never learn to walk nor talk and die by the age of two. He was five before anything showed up on his mri and did not have any major symptoms untill about 8 months ago. Chris was in a normal classroom till 2 months ago. I am so glad that I did not listen to the 6 doctors that told me aborting my baby boy would be the best option. Chris will be 8 in August, and these have been the best 8 years of my life.

 


   
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