Addi and Cassi: Twins with a Rare and Deadly Disease

by Susan M. Heim

Four-year-old identical twins, Addison and Cassidy Hempel, seemed perfectly healthy at birth, but at the age of two, they were diagnosed with a rare and deadly genetic disease called Niemann Pick Type C (NPC). The disease is called Childhood Alzheimer's because it is slowly robbing these beautiful twins of their minds -- and their lives. Every day, fat and lipids -- the dreadful cholesterol that everyone hears about -- are building up inside each cell of their bodies and starting to destroy their brains. Unlike most people, their cholesterol problem is not centered in their bloodstream, like the HDL or LDL you hear about. The cholesterol that is hurting Addi and Cassi is getting stuck inside millions of their cells -- the building blocks of life -- and causing a massive traffic jam. Researchers know that the genes for NPC are found on Chromosome 18. One in 150 people carry a faulty NPC gene and don't experience the disease, but if they inherit two copies of the gene (one from each parent, like Addi and Cassi did), the result is NPC.

Since their diagnosis, the twins' parents, Chris and Hugh, have been on a desperate quest to find a cure for NPC, seeking answers from leading experts around the world. During a recent PET scan of the girls' brains, doctors found a glucose metabolism problem in the frontal lobes of their brains, which is often found in elderly people with dementia, as well as inflammation in the center of their brains. Many doctors 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.

While Addi and Cassi are vibrant young twins who love to sing and play and go to school, they will eventually lose critical functions -- including the ability to walk, talk and eat -- if a cure is not found. Needless to say, these twins -- and other children like them who have NPC -- desperately need your help! Their story has been featured on Good Morning America, Dr. Phil's The Doctors, and other programs, but more help is needed. I encourage you to visit their website, www.addiandcassi.com, to find out how you can help, even if it's just by spreading the word about these lovely twins or including them in your prayers. And please visit their wishlist at http://addiandcassi.com/guestbook. They're trying to collect 1 million wishes in an effort to raise awareness about NPC. If more people know about Addi and Cassi -- and NPC -- we just might be able to unravel the mysteries of this deadly disease.