Abigail Alvey

#AbbyStrongFightsNPC

DREAM TRIP TO DISNEY WORLD
AND GIVE KIDS THE WORLD VILLAGE

Goal: $5,000

Abby is an 8-year-old girl from Richmond, VA, who was diagnosed with Niemann Pick Type C in March 2019.

Abby's journey to diagnosis was challenging due to the rarity of her disease. She was born healthy with no initial red flags but started showing symptoms of gallbladder and liver issues, leading to an initial misdiagnosis that persisted for several years. It was only after seeking a second opinion at CHOP and later consulting a metabolic specialist that Abby was finally diagnosed with Niemann Pick Type C (NPC). The diagnosis revealed that her entire family carried the genetic disorder.

To manage her condition, Abby entered a trial medication program at the National Children's Hospital, involving spinal infusions every two weeks. She also attends numerous appointments in various locations, including Chicago, Maryland, and D.C., and undergoes regular therapy. Abby requires assistance with walking and understanding her needs.

Abby's diagnostic journey underscores the importance of finding the right doctor at the right hospital to fully understand her symptoms and provide her with the correct diagnosis and challenging prognosis.

Her family holds onto the hope that the medication received through a spinal infusion every other week, 2 hours from her home, will keep her disease progressing slowly. NPC has no cure, so they take each day as it comes.

Her dad said, “She would just be happy with nearly anything. She always talks about going to Disney World. She dreams of being a YouTube star, too. She loves to talk about traveling to another country to see a castle.”

Our goal is to gather $5,000 to send Abby and her family on a magical journey to Disney World and Give Kids the World. This incredible experience will let them cherish moments of joy in a place where their current challenges can momentarily fade away, filling their hearts with warmth and hope!