For 18 years, Mohammed Taha and his wife were dedicated to a daily labor of love that consisted of taking care of the many needs of their beloved daughter, Nejoud.
“We love her,” Mohammed said. “She’s our precious child and we take good care of her and that’s what our doctors always tell us – the home environment is probably one of the most reasons why she’s surviving for this long because historically people in her condition, they don’t last past a year.”
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WATCH HERENejoud was born with Edwards Syndrome, a rare genetic disorder.
“She’s bedridden and she cannot walk,” he said. “She cannot sit. She cannot talk.”
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Her parents feed her through a tube every three hours.
“She doesn’t use her mouth to eat,” he said.
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Nejoud has many complex medical needs. Mohammed retired four years ago, and since then, he has been receiving social security benefits for his minor children, including Nejoud, he said.
But when Nejoud turned 18, things changed.
“We received notification from Social Security quickly that she’s no longer eligible for benefits,” he said. “Unless she’s a full-time student or she’s disabled.”
Mohammed applied for the benefits under her disability.
“I got contacted by the Tallahassee office and provided them with the doctors that she sees, and they communicated with the doctors,” he said. “The doctors sent them the forms that they needed, and they basically established that she is disabled. That went very quickly – within 3 weeks, 4 weeks it was done. ”
Mohammed said they told him Nejoud’s file had been sent to the local office to finalize her application. But he said what he thought would be a quick process turned into months of waiting.
“I don’t know how long it takes to process a paper,” he said. “She has a lot of expenses, and we need to get the payments to help us with covering her expenses.”
He said they followed up several times, calling and even visiting the local office, with no luck.
“It’s really frustrating,” Mohammed said.
That’s when he decided to contact NBC6 Responds. NBC6 contacted the Social Security Administration on Nejoud’s behalf and, in a statement, they “…apologized for the delay in updating the record and resuming her payments.” It goes on to explain that she “…was receiving Social Security benefits as a minor child on the record of her father” and that the benefits were converted to those of “…a Disabled Adult Child (DAC) on her father’s record. Unfortunately, this was not done timely, but the record has now been corrected and benefits will resume shortly.”
“It was a relief, actually,” Mohammed said.
After NBC6 Responds got involved, Mohammed said he received a call letting him know Nejoud’s benefits were being finalized and, a few days later, he finally received the approval letter he had been so anxiously waiting for.
“We’ve been trying so hard to reach out to them and have them help us,” he said. “But obviously no response until you guys have intervened on our behalf, and we do appreciate that a great deal.”
In a very sad turn of events, a few weeks later, Mohammed contacted NBC6 again. He informed us that Nejoud suffered a complication and died.
The family hopes her story will help ensure others don’t go through such a difficult time sorting through their benefits.
To learn more about family benefits and appeals, click here:
