By james art CHESTERFIELD COUNTY, Va. — There is now new hope on the horizon for a Chesterfield girl battling a form of terminal childhood dementia.
In December, CBS 6 first introduced viewers to 9-year-old Abby Alvey, who is one of only a few hundred children nationwide with a terminal disease called Niemann-Pick Type C disease.
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It is a form of childhood dementia for which there is currently no known cure.
The FDA recently approved two drugs, MIPLYFFA (arimoclomol) and AQNEURSA (levacetylleucine), which should help stop the progression of the rare disease.
The approval gives Abby’s family a whole new hope.
“The sun rises, the clouds part, or whatever euphemism you want to use. It looks really good,” said Abby’s father, Garland Alvey.
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Abby and her family testified before the FDA to help get the drug approved to try to give their little girl a chance at life.
Without treatment, Abby was beginning to lose her ability to walk, talk, talk, and eat.
Garland remembered how proud he was of Abby for helping get him approved.
“I’m not even exaggerating when I say she saves lives,” he said.
According to Alvi, Abby had been taking one of the drugs for a month.
He said the results are already apparent to her parents and her teachers. The family receives calls from her school saying they have noticed a difference in her engagement.
“We see it at home as well and we try to say maybe she’s just feeling a little bit better.” but we’re starting to see signs that we can’t ignore that she’s much more cognitive now,” he said.
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Abby’s doctor at Children’s Nationwide Hospital in Washington, DC, applauded the work done by the Alvey family to get the drug approved.
“It’s really inspiring to work with families like hers. This advocacy really makes a difference when we all work together and stand by these wonderful children,” said Dr. Schur.
Although the potential of these drugs gives this family a new sense of optimism, they plan to keep working to get Abby to live a lifetime in a short time.
“We know we’re much closer to a cure, and now that we have drugs that stabilize and stop the progression — the next step is a cure, and that was a pipe dream,” he said.
Abby’s parents created a non-profit organization called Abby Strong to help raise funds and awareness for more research and support for families with children with rare diseases.
If you are interested in learning more about the organization, you can click here.
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