Disability Medical Conditions: Spinal Muscular Atrophy
Spinal muscular atrophy is a genetic disease that affects about 1 on 6,000 or 1 in 10,000 of all babies worldwide. The Social Security Administration allows families to apply for funding through the Compassionate Allowances program because in about half of the cases, the disease progresses rapidly. Most children never learn to walk, sit or stand and require multiple surgeries even though their brains develop normally. Even in mild forms of the disease, children and adults have difficult with mobility and many require surgeries. Only a few children diagnosed with the disease live to adulthood.
The Compassionate Allowances program expedites the application process for diseases that are likely terminal or severe enough to cause symptoms that quickly affect a family’s income. These diseases require immediate and expensive medical treatment. Applying for Social Security income can take several months and even years if you go through the traditional application process.
The disease is caused by the absence/defect in the Survival Motor Neuron Gene (SMN1), according to the Spinal Muscular Atrophy Association (SMAA). The gene controls the protein that oversees the motor neurons. In other words, without this protein, the brain cannot control the muscles. About 50 percent of the children affected have the worst form of the disease. These children experience muscle deterioration, respiratory problems and mobility issues which require major and expensive surgeries. Most children die before the age of two, according to the SMAA. Spinal muscular atrophy is the number one genetic cause of death in infants and toddlers.