Family fears drug company’s decision will cause son to die

Click here for updates on this story

    OMAHA, Nebraska (KETV) — An Omaha mother feels like she reliving a nightmare. She and her husband recently learned their son’s lifesaving medication is being taken away.

KETV Newswatch 7 first met the family in 2018 shortly after Osama Hamad was diagnosed with a fatal genetic disease called Niemann-Pick Type C.

The disease is often referred to as childhood Alzheimer’s because the body essentially forgets how to function.

“You forget how to walk, talk, and eventually breathe,” Osama’s mother, DeAnna, said.

But a year later, when we caught up with the family again, they had hope because an experimental medication Osama was taking seemed to be delaying his symptoms.

“We just want him to be like any other little boy,” his mom said.

But the news the family received in January changed everything.

“It feels like the beginning of the end,” she said.

After October, Osama will no longer be allowed to take the drug he’s taken for the last three years.

“We haven’t gone backwards in any skills. Everything has gone forward,” she said.

Monday at 10 p.m., KETV Newswatch 7 Investigates looks into the decision made by the pharmaceutical company and talks with Osama’s doctor who says believes recent clinical trials should have been done differently.

Please note: This content carries a strict local market embargo. If you share the same market as the contributor of this article, you may not use it on any platform.