Kaleb's Medical Fund
of $50,000 goal
Raised by 87 people in 39 months
My name is Janelle until recently my life have changed drastically because my 8 year old son was diagnosed with a very rare brain disease called Adrenoleukodystrophy (ALD). On the day of diagnosis was the very first day I have ever heard of this disease. Adrenoleukodystrophy, or 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. 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.
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At first I was in denial and refuse to believe that this could happen to my beautiful boy, my heart is broken in a way that it could never be mended. Right away I started doing research and found that there are treatments that can slow the progression of the disease however it cannot be cured as of yet (I HAVE HOPE) there are clinical trials going on however because it is a very rare disease funding to study this disease is very limited. I now find myself in a tough situation as medical treatment for my son is very expensive and therefore I am asking for help to possibly save my little boy's life just a bit longer in hopes that a cure can be found. He is in need of a BONE MARROW TRANSPLANT as he is borderline for any help, because once the disease progresses to a certain extent nothing else can be done, he needs this among other medical needs. All I am asking for is a bit more time with my boy. I will be forever gratefull and thankfull to everyone for there help and support. Thank You and God Bless!!!