Disability Medical Conditions: Zellweger Syndrome
A diagnosis of Zellweger Syndrome is devastating to parents who had hoped for a happy childhood for their baby. Because the symptoms are severe often the treatment puts a financial strain on the family and one parent may have to quit their job to stay home with the child. The Social Security Administration has designated Zellweger Syndrome as one of the conditions approved under its Compassionate Allowances Program.
The symptoms of Zellweger Syndrome show in infants, usually shortly after birth. The symptoms include poor feeding habits, poor muscle tone, liver cysts and poor liver function and seizures. According to the United Leukodystrophy Foundation, children may also exhibit these physical characteristics:
• High forehead
• Flat occiput: The occiput is the bone forming the back of the skull, and encloses the hole where the spinal cord reaches the brain
• Large fontanel (baby’s “soft spot)
• Shallow orbital ridge (bony ridge beneath the eyebrow)
• Low-broad nasal bridge (the bridge across the nose)
• Epicanthus a fold of skin that comes in across the inner angle of the eye, common in children with birth defects such as Down syndrome
• High arched palate (roof of the mouth)
• External ear deformities
• Micrognathia: small chin
As of 2010, there is not cure and infants usually don’t live past one year old. The condition is an inherited disease. Both parents have to carry the gene. The National Institutes of Health classifies Zellweger Syndrome as a rare disease which means it affects less than 200,000 of the U.S. population.
With the Compassionate Allowances Program, parents can get Social Security income quickly where it takes several months to be approved with normal application procedures. This allows parents to have an income and health benefits to care for their infant affected by Zellweger Syndrome.