My Donation Page

A mother speaks out about the devastating and incredibly rare genetic disease that has "stolen" her son from her. Crystal Wilsey's son Jovani , who is now 9 years old, thrived until the age of 8 when his health very suddenly and without warning deteriorated after coming down with influenza a year and a half ago, than only weeks later he was diagnosed with Adrenoleukodystrophy. (ALD a neurological disease that affects the brain.) This once happy-go-lucky and funny little boy is blind, with 85% of his hearing lost and unable to walk on his own. This condition is characterized by the breakdown of the myelin sheath that surrounds the nerve cells in the brain. The sheath is responsible for messages being transmitted efficiently along these nerve cells. Within months his symptoms included "Progressive Dementia." This disease has NO known cure and death usually occurs within three years of developing the disease. Even though Jovani has these symptoms, he still enjoys eating, playing with his little toy guys by feeling them with his hands, swimming, and feeling the sunshine on his face. Crystal, his mother gives him around-the-clock care and would appreciate any donations, which will be used to purchase a large above ground pool for Jovani to swim in every day until he is unable to swim anymore. Jovani does not like to leave his home. He senses people staring at him and he has out-bursts. The little guy is a forgotten little boy in society now. Any donations will be appreciated. Thank you.