UCF graduate donates $500 to widow, 25-year-old with rare disease

Story inspired father of teens with same disease

Dr. Ahmad Abualsamid, a PHD graduate from the University of Central Florida, donated $500 to fill in the financial void that the end of Cares Act stimulus payment left in the lives of a widow and her 25-year-old daughter with special needs.

Abualsamid said when he saw the recent “Make Ends Meet” report on News 6 featuring Donna DeMarco and her daughter, Danielle, it was personal to him. His two teenage children were diagnosed with the same rare disease known as Fragile X- Syndrome, the leading genetic cause of Autism.

“Every time I see a child with Fragile X-Syndrome specifically, I think of them as my own child,” he said.

Under the federal Cares Act, the economic stimulus credit for dependents was only allowed for children 17, and that meant Danielle DeMarco was too old to be considered a dependent despite being unemployed and living with her mother full time.

“Their voices need to be heard,” Donna Demarco said. ”They need to be taken care of.”

Abdualsamid, who has a PhD in computer software, earned his second Doctorate with a dissertation on Applied software tools for supporting children with intellectual disabilities.

His 17-year-old daughter Asia was diagnosed with the disease when she was 9.

“You could think of it as rare because 1 in 4,000 are diagnosed with Fragile X, he said, “but if it’s your child you know it’s the only one that matters.”

Emma Hemness an attorney advocate for elderly and special needs adults in Tampa said Congress made an unintentional oversight by using the strict tax definition of dependent.

“It all boiled down to a definition that already existed, “Hemness said. “It truly is just a very narrow group of individuals that were impacted.”

Hemness’ firm designs estate planning for the parents of special needs adults who want to make sure their children have a secure financial future.

During a Zoom interview from her Tampa office she explained the rush to get an economic stimulus package approved left both elderly and special needs men and women without a lifeline.

“(Congress) didn’t foresee that an individual could get caught in this category where they would not be able to get benefits like the rest of the population.”

Rep. Darren Soto (Florida-D), of Kissimmee, said he considered the issue “critical” and was hopeful the new stimulus package would include special needs adults as independents.

“This was an unfortunate exclusion,” Soto said. ”When we’re talking about adults with disabilities they have more needs, not less needs.”

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