A Rare Disease: Living with Childhood Alzheimer's

, Posted: Fri, April 27 2012 at 5:33 PM, Updated: Fri, April 27 2012 at 11:43 PM

Today, Hadley Hope, which raises money for Childhood Alzheimer's, has a slightly brighter future thanks to a grant from local businesses.
The group was started by the Hadley's -- who are going through something no parent should have to -- as their kids may forget how to walk and eat, their parent's names, and even their own name. Imagine forgetting everything. Mother, Laura Hadley says, "It changes everything, your perspective about how your children will grow up and their future changes completely."        Her kids, Peyton and Kayla Hadley were diagnosed with Neimann Pick Type C about 4 years ago. It's a debilitating disease that mimics the effects of Alzheimer's.
"It's cholesterol that builds up in the cells, so the cells start dying off mainly in the kidneys and brain... eventually they become bed ridden," father, Bryan Hadley tells us.
There are only 500 known cases world wide, 100 in the US. Slowly, these kids lose everything.
"All these little things that we take to function, you don't realize until they're taken away," says Laura
The Hadley's decided they had to do something, so they started the Hadley hope fund - raising money for research. Recent scientific discoveries are giving them hope.
About a year ago the 14 and 11 year old were put on Cyclodextrin, an experimental drug that actually slows the disease.
Bryan states, "They seem to be holding their own, they're not degenerating any more."
Every week their kids receive infusions, and every two weeks they travel to Oakland for spinal injections.
Laura says this drug could be beneficial for other illnesses. "It also could effect other diseases like heart disease, Alzheimer's, Parkinson's, ALS, it could effect millions of people."
Today, the Lithia Honda Love Bucket program donated $1,000 to the fund. While none of it goes directly to the family, it will benefit research... hopefully finding a cure.
Bryan says, "That's what gives us the strength to carry on and help family's around the world."
A family holding the weight of the world for all those living through Childhood Alzheimer's.
Now tomorrow, the foundation is holding a charity event at the Rogue Valley Country Club called "Vegas in the Valley."  It's a casino like event, using funny money. Tickets cost $45 online or $50 at the door. You can get more details online at hadleyhope.com

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