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.
Provided to WTVR 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.