Teen with rare genetic disease Rett syndrome making great progress with newly approved drug

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Tuesday, October 10, 2023
Teen with rare genetic disease making great progress with new drug
Daniella Sawyer was born with a rare neurological genetic disorder known as Rett syndrome but is seeing improvement from newly approved drug Dayvue. Michelle Charlesworth has the story.

MASSAPEQUA, Long Island (WABC) -- A teenager on Long Island received the best birthday present she could ever imagine over the summer and it's already paying off.

Daniella Sawyer was born with a rare neurological genetic disorder known as Rett syndrome.

It's a rare disease that occurs exclusively in girls, one in every 10,000 female births, and leads to severe impairments that impact nearly every aspect of their life -- from their ability to speak, walk, eat and even breathe easily.

Sawyer was experiencing chronic and uncontrollable seizures -- as many as 30 to 40 in one day.

It all began to change when her doctor at Cohen Children's Medical Center prescribed a drug called Daybue, which was approved by the FDA in March.

Sawyer started treatment the week of her 17th birthday in June. Now nearly four months later, the treatment has already dramatically reduced some of her most debilitating symptoms.

"She's more communicative, she walks and sleeps better at night," said Dr. Sanjeev Kothare of Cohen Children's Hospital. "All of these are good signs."

Sawyer's mother said her daughter's progress has been remarkable. Her seizures are fewer and much shorter and she is able to walk.

"She had a few words before, but now she's actually putting sentences together, she's saying like, 'up the stairs, I want to go up the stairs, I am done, no more, no more meds,'" her mother Chyrel Sawyer said.

All of that is amazing, but nothing makes things better than a surprise!

On Tuesday, something really special happened. Sawyer and her mom who is a nurse, learned they are going to Barbados where her mom's from. It's a dream come true.

"We're going to fly the family to Barbados for holiday," said Mackie Holder, Consul General for General Barbados in New York.

Now Sawyer is going on a trip with her mom and dad because some very nice people heard that story and made some phone calls.

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