CHESTERFIELD COUNTY, Va. -- The parents of a Chesterfield girl with terminal childhood dementia said they have been overwhelmed by the response to their family's vow to "live a lifetime" in a short time.
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 8-year-old 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, previously 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.
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Parents of girl with terminal childhood dementia vow to 'live a lifetime'
Alvey said he was told to make memories with Abby as 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 it because of the disease's constant progression.
As a result, the family focused on finding normalcy and ways to maximize Abby's life experiences. Alvey also 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 in a December interview. "We go and do as much as we can and live a lifetime in a short amount of time."
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Abby's story, her bright smile and superhero character struck a chord with viewers and readers.
In fact, her family said it allowed them to raise awareness about rare diseases while also raising thousands to fund more adventures for Abby, including a trip to Disney World.
“It’s just been really incredible. We’ve had such a huge positive response," Alvey said. "It has helped me know I’m going in the right direction."
The family also said people across the country have reached out sending them good energy or sharing their experiences with rare diseases or dementia.
Alvey said some people have been stunned to learn that children can experience dementia just like adults.
Abby’s story also inspired one Central Virginia business owner to host a benefit in her honor.
A Party Playhouse in Mechanicsville will be hosting tea time parties with Abby on Friday, Feb. 23 and Saturday, Feb. 24. Those dates are close to National Rare Disease Awareness Day on Feb. 29.
Alvey said children will get to have tea and play with Abby and her favorite princess Elsa, while raising funds to send Abby on more adventures.
“That meant the world to me to not have that stress of figuring out what to do just sort of taken off my shoulders,” Alvey said.
The family said they never expected the incredible outpouring of support or knew how much it would help in their mission to be strong for Abby.
The Alveys said it has had a huge impact on their family and they could not be more excited to keep sharing Abby’s adventures.
Click here for more information or to get tickets to the Tea Time with Abby; A RARE Affair.
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