Family gets insurance cooperation for 4-year-old’s historical lifesaving treatment
WINFIELD, Ala. (WBRC) - Earlier this month the family of a four-year-old girl from Winfield was heartbroken to find out that money could stand in the way of saving their little girl’s life.
Four-year-old Celia Grace was diagnosed with metachromatic leukodystrophy, or MLD, in March of last year, just weeks before her third birthday.
Doctors said the genetic brain disease is rare, and the average life span at the onset of symptoms is 10 to 20 years.
“A devastating disease which there is no cure for, and going untreated will cause her to lose all function pretty much of life. First, she’ll lose the ability to walk, talk, eat, speak, and then it will progress to there,” said Celia Grace’s father, Gary Hamlett.
Doctors discovered the cancer during a surgery to remove her gall bladder.
“There was something present inside the mass in her gall bladder that the pathologist from Children’s of Alabama wanted us to have genetic testing done. So, right now she has no symptoms, so we’re trying to take care of this before she does because if she starts showing symptoms, then it can be too late,” said Celia Grace’s mother, Kassie Hamlett.
It became a race against the clock to get Celia Grace the care she needed. But everything came to a halt when the family says Blue Cross Blue Shield informed them that the gene therapy treatment that could help save the 4-year-old’s life would not be covered by insurance.
The Hamlett’s said a special application to get the treatment from Europe had been approved by the FDA. But their insurance deemed the gene therapy “experimental,” which isn’t covered in the Hamlett’s policy.
They would have to scramble to come up with the money to resume Celia Grace’s treatment.
Then their prayers were answered.
Blue Cross informed the family that they would cover everything.
On September 27 Celia Grace became the first person in the U.S. to receive gene therapy for MDL.
As she continues to recover her family is asking for your prayers.
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