Mother Talkers

Every Parent's Nightmare

Wed May 07, 2008 at 08:46:27 AM PDT

An acquaintance at Ari's school actually knows these precious girls and sent around a link to their personal website. The girls, four-year-old twins Addison and Cassidy Hempel, suffer from a rare pediatric case of Alzheimer's disease known as Niemann-Pick Disease Type C. The vast majority of children with the disease die before the age of 20, according to a recent story by ABC News:

"You can't tell your kids they're dying," said a sobbing Chris Hempel, Addison's and Cassidy's mother. "They'll never know."

The Symptoms and Signs

The Hempel family didn't always carry this burden. When the girls were born, they were healthy and hitting all the major milestones.

By their first birthday, they knew how to walk, but soon the girls' parents knew something was wrong.

When Addison and Cassidy were two years old, they caught a viral infection they couldn't shake. Scans showed each girl had an enlarged spleen, but doctors couldn't determine the cause. Then, things began to get worse.

"I started seeing increasing symptoms with balance and coordination -- bumping into walls and falling down," Hempel said. "And when they were around other kids, I noticed they weren't running as quickly or jumping. I started getting really concerned."

  • ::

Here are the facts about Niemann-Pick Disease, according to ABC News:

The disease stems from a genetic mutation that causes cholesterol to build up in the body, according to the National Niemann-Pick Disease Foundation.

NPC patients are unable to metabolize the cholesterol properly within their cells so the excessive amounts accumulate within the liver, spleen and brain.

The illness is so rare that only about 500 cases have been diagnosed worldwide, according to the foundation.

Besides savoring even the difficult moments with their daughters, the Hempels continue to seek a cure. Addison and Cassidy have undergone experimental treatments, hopefully bringing them -- and all Alzheimer's patients -- closer to a cure.

Tags: ABC News, Addison Hempel, Cassidy Hempel, pediatric Alzheimer's disease, Niemann-Pick Disease Type C (all tags)

View Comments | 13 comments