8 yr old & 17 month old with ALD!
Our 8 year old son will be undergoing a BMT in the very near future. We just learned of his ALD diagnosis early January of this year, 2009. Since then we have also learned that our 17 month old son also has tested positive for X-ALD.
I, like many new nothing of ALD prior and it is only becuase of this website www.aldfoundation.org and a couple others that my wife and I pushed to have this disorder tested for. We ultimately were hoping to rule it out as a cause for his issues.
I'll try to keep this short. Basically our 8 year old over a period of 6 months continued to become worse in academic areas, handwriting is hardly legible, and he continued to have problems in school. The year prior in school he was excelling. This prompted us and teachers to have him tested for learning disabilities. After that battery of test, it was recommended he see a neurologist. After being sent in the direction of a neurologist. We began to research further about Addison's Disease which he was diagnosed with 2 years prior. So after doing a simple google search with the key phrase "Addison's Disease" the first search hit was the ALD Foundation website. From there we searched further and compared other stories of ALD patients posted online and were persistant to have ALD either identified or ruled out forthwith.
It is obvious that as a parent our main objective is our children and their health and safety. While going through this process with our 8 year old, 17 month old and caring for our other 2 children. I intend to grab the bull by the horns and do my part with the help of others to educate further on this and other rare disorders.
It has only been a couple of days over a month since I first learned about ALD. I have talked with other parents with ALD boys and realized more needs to be done to educate the medical arena and others.
To learn more about us as we progress to overcome and deal with ALD I invite you to vist www.otoole4.info.
All of those out there that are affected by ALD and AMN you are in our prayers.
Kevin O'Toole
Posted By: otoole4.info
Posted On: Feb 7, 2009 9:13 am
Posted By: otoole4.info
Posted On: Feb 7, 2009 9:16 am
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