The aim of an argument or discussion should not be victory, but progress.

Joseph Joubert

http://addiandcassi.com/

Dare to Dream For A Cure

Our Fight Against Niemann Pick Type C, A Fatal Neurological Disease That Robs Kids Of Their Lives
Who would ever think that something we were born with, our genetics, would cause an Alzheimer’s-like neurological disease that is robbing us of our minds and lives? Our names are Addison and Cassidy Hempel. We’re 4 year old identical twins who live in Reno, Nevada, USA. In October 2007, after a two year medical odyssey, we were diagnosed with a rare   more...and deadly disease that virtually no one has heard of. It’s called Niemann Pick Type C (NPC) disease.

A Cholesterol Traffic Jam In Our Cells
Every moment of everyday, fat and lipids — the dreadful cholesterol that everyone hears about — is building up inside each cell of our bodies and is starting to destroy our brains. Unlike most people, our cholesterol problem is not centered in our bloodstream — it’s not "HDL or LDL," that is harming us. The cholesterol that is hurting us is getting stuck inside millions of our cells — the building blocks of life — and is causing a massive traffic jam.

A Look Inside Our Brains
Since our diagnosis, our parents have been on a quest to find out all they can about NPC and how to treat us. From trips to the Mayo Clinic to the National Institues of Health (NIH), our parents have been seeking answers from leading experts around the world. We are getting closer to clues and treatments for all NPC kids — and possibly others who suffer from neurological disorders. A few weeks ago, we underwent unprecedented PET brain scans (watch here) at Children’s Hospital of Michigan. Our brain scans show that we have a glucose metabolism problem in the frontal lobe of our brains which is often seen in elderly people with "dementia" as well as "inflammation" in the center of our brain. Many doctor’s believe that inflammation is a key component in neurological diseases ranging from ALS to Parkinson’s. These new findings may lead to even more discoveries and provide further clues as to how we might treat those suffering from neurological diseases like NPC.
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