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CHESTERFIELD, Va. (WWBT) – At PARK365, you can find Abby Alvey exploring and showing her love for all things pink and purple.

One thing the 9-year-old Chesterfield girl has shown her parents, Garland and Melissa, is resilience and strength during her journey with childhood dementia.
โSheโs really not just changed our lives; sheโs changed everyoneโs life around her,โ said Garland Alvey, Abbyโs father.

Abby was diagnosed with NiemannโPick Disease Type C, a rare neurodegenerative disorder that can slowly take away all your abilities.
โIt definitely rocked all of our worlds,โ said Abbyโs father, Garland. โWe thought we were in this rollercoaster of emotions thinking that we figured it out and sheโs fine and realizing that she wasnโt.โ
The 9-year-old started a clinical trial for Adrabetadex, a medication Abbyโs family said to put a stop to her symptom progression.

โItโs been a miracle,โ said Garland Alvey. โSheโs going to school every day.โ
Abbyโs family has been fighting to expand access to one of the several medications through FDA approval.
โThere was a point there we felt really helpless that we would never get any of these four or five treatments across the finish line,โ said Garland Alvey.
This journey reached a major milestone after the FDA approved two drugs, Miplyffa and Aqneursa, to treat NPC.
โThis is a life-threatening, very serious disorder, and the fact that we have more in our arsenal to really treat it has been just wonderful,โ said Dr. Natasha Shur, a medical geneticist who works at Childrenโs National Hospital in Washington D.C.
Dr. Shur is part of Abbyโs care team and believes this approval will improve the lives of patients across the country.
โNot only in their day but in their entire futures going forward and really helps maximize their potential and ability to interact,โ Dr. Shur told 12 On Your Side.
The approval is paving a new path in Abbyโs treatment plan.

โShe actually has started Aqneursa, so weโre going to sort of start her on these two drugs,โ said Garland Alvey. โAll the while staying in her current trial, which we heard good news that there should be some movement there as well.โ
The Alvey family will continue this journey until they find a cure, staying #AbbyStrong every step of the way.
โWhere we thought Abby would just be sort of a footnote in NPC, this generation actually has a chance,โ said Garland Alvey. โWeโre never going to stop fighting.โ


