Mome reads Mommy, My daughter's way to spell it when she was younger... It stuck. My son calls me Mome... just like it looks. I now sign all my notes to them "Love, Mome". It's our inside secret and makes them smile. I always want them to smile.

Thursday, July 17, 2008

Addi and Cassi

In my research today I came across the most adorable twins with a rare illness, NPC. It's called "Pediatric Alzheimers" and these girls and their family have endured so much. I am going to be making curecaps for their fundraising efforts and encourage you to take a look at their story and their website and see what you can do to help.
Child Alzheimer's? Disease Attacks Twins' Minds
Addison and Cassidy Hempel Were Diagnosed With NPC at Age 2
Twin 4-year-old girls Addison and Cassidy Hempel are similar to their contemporaries in many ways: They love nursery rhymes; "Humpty Dumpty" is the family favorite; they go to school and play house.
(Watch the video)
But the identical siblings differ from other children in one major way. The girls' world of childhood fantasy is haunted by a heartbreaking reality that they are fighting a disease that seeks to steal their memories.
Like a pediatric version of Alzheimer's disease, Niemann-Pick Disease Type C (NPC), from which the girls suffer, causes patients to slowly lose their motor skills and then their minds. Rarely do children with NPC live past their teenage years.
In fact, the National Niemann-Pick Disease Foundation says NPC always is fatal and the vast majority of children die before age 20 -- with many not making it to the age of 10.
"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 disease stems from a genetic mutation that causes cholesterol to build up in the body, according to the National Niemann-Pick Disease Foundation.

Niemann-Pick Disease stems from a genetic mutation that causes cholesterol to build up in the body, including in the liver, spleen and brain.(Getty)
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 foundation.
Even with the grim news, the Hempels refuse to give up hope. In fact, Chris Hempel has become a self-described "medical detective," searching for any tidbit of information that could help her family.
"We have this death sentence hanging over us, but we want to do something about it," she said. "I'm just turning over every stone. It's like a forensic expedition is really what it's like. You're on this expedition for your children. Get other people to get a fresh look. See if they can solve it."
Chris and Hugh started a Web site about their girls and also began talking with other parents to compare notes with researchers. Addison and Cassidy even had their brains scanned by Alzheimer's experts, all in the hope someone would be able to help them.
"It's a fundamental belief we have that scientists working on neurodegenerative diseases can learn from each other," Hugh Hempel said.

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