I am a teacher at Our Lady of Grace Elementary School in Fairview, NJ. My school is sponsoring a Walk-A-Thon to help support Adrenoleukodystrophy (ALD). One of our 2nd grade students has been diagnosed with this deadly disease. He and his family are currently in Minnesota. The child, Massimo Phillipy, is undergoing a Bone Marrow Transplant. He is struggling terribly and so is his family. You can learn more about Massimo and his progress from www.caringbridge.org/visit/massimo.
Adrenoleukodystrophy, or ALD, is a genetically determined neurological disorder that affects one in every 17,900 boys worldwide. The presentation of symptoms occurs between the ages of four and 10 and affects the brain with demyelination. Demyelination is the stripping away of the fatty coating that keeps nerve pulses confined and maintains the integrity of nerve signals. This process inhibits the nerves ability to conduct properly, thereby causing neurological deficits, including visual disturbances, auditory discrimination, impaired coordination, dementia and seizures. Demyelination is an inflammatory response, and nerve cells throughout the brain are destroyed.
Boys develop normally until the onset of symptoms occurs. Symptoms typically rival those of attention deficit disorder before serious neurological involvement becomes apparent. The symptoms progress rapidly and lead to vegetative state within two years and death any time there after.
We were hoping you would be interested in helping us get donations towards this cause; a pair of sneakers, gift cards, etc. We will have prizes for students who raise the most money. Your support and help would be extremely thankful and grateful. Please contact me via email, Mags0220@aol.com or phone 201-988-5624 if you are able to support such a great cause and poor boy that is in extreme need of help. I know our school would be tremendously thankful.