Disability Medical Conditions: Canavan Disease (CD)
Canavan Disease is a genetic disorder where the white matter of the brain degenerates because of mutations in the gene for an enzyme called aspartoacylase. The disease affected infants and most do not live to be four years old. If both parents are the carriers of the gene that causes Canavan Disease, there is a 25 percent chance their child will be born with the condition. The disease affects all ethnic groups but is most often found Ashkenazi Jews from eastern Poland, Lithuania, and western Russia, and Saudi Arabians, according to the National Institute of Neurological Disorders and Stroke.
The Social Security Administration allows parents of children affected by the disease to file for benefits under the Compassionate Allowances Program. The program allows applications to forgo some of the red tape normally associated with applying for benefits.
The symptoms of Canavan Disease usually appear shortly after birth. Children may show signs of mental retardation, loss of motor skills, difficulty feeding, poor muscle tone and a poorly controlled head. The infant may be quiet, which could be because they have trouble hearing. These symptoms are similar to other diseases known as leukodystrophies which includes Zellweger Syndrome.
There is no cure for Canavan Disease. However, advancements in the treatments have prolonged the life of some patients and some live into their teens and twenties, according the National Institute of Neurological Disorders and Stroke. Because of the treatment needed to keep their children comfortable and pain free, some parents have to quit their job. Social Security Income is often their lifeline as they struggle to pay medical bills and maintain a home.