For the longest time, doctors here in New Jersey didn't have a diagnosis for a little girl who was unable to walk and talk. By early October of last year, they had ruled out autism and cerebral palsy. In order to determine what she had, they needed to run a lot of tests -- tests that cost a lot of money and left her father wondering what he was going to do.
Although doctors were finally able to diagnose the now 8-and-a-half-year old girl with a condition known as autosomal dominant mental retardation 19, it's incredibly rare, her father explains, telling one reporter that "[doctors have] never found anyone on this earth with this particular disease." Now, the girl's best hope for treatment lies in the hands of a neurologist who believes that inserting electrodes into her frontal lobes may help stimulate communication between her brain and the rest of her body.
The treatment is expensive though, much as is the case for people with serious medical conditions. In this girl's case though, despite the rarity of her condition, she may qualify for SSI benefits that could be used to offset the cost of her treatments.
Even though her condition does not appear on the list of Compassionate Allowances, her condition is medically similar to another condition found in the Social Security Administration's Bluebook: Section 111.07 Cerebral palsy. Though doctors in the girl's case ruled out cerebral palsy, her condition is similar to cerebral palsy in the sense that both conditions inhibit a person's ability to move properly, cause an intellectual impairment, and can significantly affect a person's ability to communicate verbally.
Any parent is likely to worry after learning that their child has rare disabling condition. That's because some parents are already aware of difficult it can be to get benefits when a condition is relatively unheard of or unknown altogether. By finding a medically similar condition though, and getting help from a lawyer when the process becomes too difficult to bear, a person can increase their chances of accessing benefits and helping their child financially for the rest of their life.
Sources: PIX 11, "New Jersey girl diagnosed with unheard of medical condition," Howard Thompson, June 15, 2015
PIX 11, "PIX11 viewers help girl with mystery illness," Howard Thompson, Oct. 2, 2014
UniProt.org, "Disease - Mental retardation, autosomal dominant 19," Accessed June 22, 2015
Cerebralpalsey.org, "How does cerebral palsy affect people?" Accessed June 22, 2015
Social Security Administration, "111.07 Cerebral palsy," Accessed June 22, 2015