CHESTERFIELD COUNTY, Va. -- The parents of a Chesterfield girl with terminal childhood dementia are vowing not to "give up” and are sharing their child's story to raise awareness and inspire other families.
Abby Alvey received the rare and terminal diagnosis of Niemann-Pick Disease type C or NPC on her fourth birthday, according to her parents.
The girl is one of only a couple of hundred children across the country with the neurologically progressive disease commonly referred to as childhood dementia.
Garland Alvey, Abby’s father, said there is no approved cure or treatment for NPC.
“It’s just the most horrible, disgusting thing you can imagine," Alvey acknowledged.
Alvey said that because Abby’s disease is so rare, the road to receiving a diagnosis was long and traumatizing.
The symptoms started when the newborn began bruising and her liver and spleen were swelling when she was just days old, according to her father. Then when she was three, Abby’s speech changed and she would lose her balance, her father recalled.
"The child starts losing the ability to walk, losing the ability to talk and speak, eat," Alvey said.
Alvey said he was told to make memories with Abby, who is now eight years old, since she is not expected to live past middle school.
For Alvey and his wife, Melissa, their daughter's diagnosis was devastating. They have navigated how they were going to handle the diagnosis because of the disease's constant progression.
As a result, the family focused on finding normalcy and ways to maximize Abby's life experiences.
Abby goes to school, dances, loves arts and craft and taking care of her babydolls.
The family calls the phrase, “tomorrow is never promised today to anyone,” their north star.
The couple knows their time with Abby is fleeting, so Alvey created a superhero character to help his daughter understand their fight.
“She’s Abby strong and she is fighting for all of her NPC buddies," he said. "We go and do as much as we can and live a lifetime in a short amount of time."
The family hopes Abby’s story will encourage genetic testing and the screening of rare diseases for newborns to avoid potential fatal misdiagnoses and time lost for potential clinical trials and treatments.
The Alveys believe it is critical to improve access to funding for kids whose diseases lead to Alzheimer’s and dementia.
The family hopes their next adventure will take Abby to Disney World as her parents feel she deserves a chance to do the things most folks sometimes take for granted.
“We are not going to just hide and give up,” he shared.
If you would like to help Abby's journey to Disney World, click here to donate to the family's GoFundMe.
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