Has your child been diagnosed with Sanfilippo Syndrome and you’re wondering if he or she may qualify for Social Security disability benefits?
My name is Kaitlin Wildoner and I’m an attorney who helps disabled clients obtain their disability benefits as quickly as possible so they can focus on getting better.
Today, we’re going to discuss Sanfilippo Syndrome and when it may be able to qualify for the Social Security Disability compassionate allowance program. Sanfilippo Syndrome is a type of MPS IIIA, a rare genetic metabolism disorder. Essentially, a change in a single gene makes a child’s body unable to break down certain carbohydrates like sugar.
The symptoms of Sanfilippo Syndrome include intellectual disability or developmental delay, hearing loss, corneal degeneration, coarse or rough facial features, a short stature, thickened skin, sometimes an enlarged liver or spleen, hernias, joint stiffness, carpal tunnel, sleep apnea, and heart disease. Like other forms of MPS III, Sanfilippo Syndrome symptoms typically appear after the first year of life and there is currently unfortunately no cure.
Social Security considers extreme cases of Sanfilippo Syndrome to be evaluated under the compassionate allowance program using listing 110.08B, which is defined as a spinal cord disorder with disorganization of motor function in two extremities, resulting in an extreme limitation in the child’s ability to stand up from a seated position, balance while standing or walking, or use their upper extremities. Those limitations must persist for at least three consecutive months after the initial diagnosis.
Because this is a childhood listing and compassionate allowance, the child’s parents must also meet the income and asset requirements for SSI, or be disabled, retired, or deceased and currently receiving Social Security benefits themselves.
When reviewing Sanfilippo Syndrome cases, Social Security is looking for medical records that include the clinical exams that will describe certain diagnostic features of the impairment. They will be looking for lab tests that show the results of genetic testing and they may be looking for urine tests and possibly MRIs and CT scans.
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