Syrian family thanks Corewell Health for helping son with rare genetic disorder
ROYAL OAK, Mich. (CBS DETROIT) – A family fled war-torn Syria and relocated to Bloomfield Hills, only to face a new challenge in the U.S.
The family's youngest son was living with a rare disease that was discovered because of a special test done at Corewell Health.
Born in 2019, two years after his family arrived in the U.S., Jad Alkadri began having seizures as a one-month-old.
"My mom realized he is not normal. He is crying a lot, and he got a fever. Also, she wasn't able to feed him," Juman Alkadri, Jad's oldest sister, said.
At Corewell Health, the family met Dr. Danielle Nolan, a pediatric epileptologist at Corewell Health's Beaumont Hospital.
"We gave him medication for the shaking, the seizures, and they weren't responding. So Jad was in the ICU bed continuing to have shaking of his arms and legs that we couldn't control with medications," Nolan said.
Dr. Nolan discovered that Jad's mother had lost two other sons to seizures in Syria.
Recognizing the urgency, she believed Jad was an ideal candidate for neurogenetic testing.
"Historically, genetic testing takes several weeks to come back and can't immediately change how we treat a patient. But for Jad, he was one of the first patients that we got in hospital genetic testing. And it actually resulted very quickly and honestly saved his life," Nolan said.
The test results revealed Jad had a rare genetic disorder that impacts the nervous system and is usually deadly. With some specific vitamins, it can be treated.
"We saw results quickly; after two days, they saw the results," Jana Alkadri, Jad's sister, said.
Although Jad developed cerebral palsy, he continues to make progress.
"We know that he's going to have delayed speech. He's going to have weaker muscles. He might not be able to walk, but then he's actually trying. He's using a walker. But, like in his brain, there's like not much damage. So he is recovering very well," Jana Alkadri said.
And for that, his sisters and mother, Ghada Mahfoud, think the world of Dr. Nolan and her team at Corewell Health.
"They were very helpful. They allowed us to understand everything. They explained things very thoroughly. And we're very grateful for their fast action and everything they did," Jana Alkadri said.
"I was able to find a medication change, and so that initial devastation that I felt, there was this ray of hope. And I was very hopeful that we found the answer and the treatment for Jad, and thank goodness that came to be," Nolan said.
For more information about Corewell Health's Pediatric Neurogenetic Testing Clinic or Pediatric Genetic Clinic, visit here.
