Good Morning America Features Addi & Cassi
On May 1st, 2008, our story was featured on ABC News Good Morning America. Please spend a few minutes to read the entire story and watch the 4 minute segment. We are so very grateful to Good Morning America for taking the time to create this thoughtful and caring story about "Childhood Alzheimer’s" and our fight against Niemann Pick Type C.
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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 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 which resulted in new brain findings. 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 Autism 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.
Genomics Revolution
Many diseases are genetic in origin but little is still known about the human genome. Everyone has the NPC genes that we carry in our bodies - we could not live without them. Of 46 chromosomes we are born with, NPC genes are on Chromosome 18. Every 1 in 150 people are carriers of faulty NPC gene. Could that be you? What genetic mutations do you carry in your body that could impact your health? In our case, both of our parents were born with a faulty NPC gene on Chromosome 18 and we inherited two copies.
Might We Help You Or Someone You Love In The Future?
At first, we did not understand why God chose for us to be born with NPC but the reason is becoming more and more clear. It’s time for NPC kids like us to bring our message to the world. Today, we are vibrant young twins who love to sing and play and go to school. Tomorrow, we are faced with losing critical functions including the ability to walk, talk and eat. We don’t want to Only Be Heard Again In Dreams. We need to be heard now. If you take time to listen to us, we might be able to help you or someone you love in the future.
We Need Your Help
Many children around the world are suffering from NPC. We need help from people like you to get the word out about NPC kids like Cathryn and Corynne so we can beat this fatal childhood illness. Our parents are on a quest to find therapies and treatments and are working towards a progressive treatment strategy for us and other NPC children. Please take some time to watch our videos, read about our Moonlight Garden Gala in May, volunteer to join the CureCaps hat making project or make a financial contribution to help us cure one of the most devastating childhood illnesses on our planet. With everyone’s help, we can conquer cholesterol together and gain critical insights into the brain.
And one final thing. We really need your wishes for cure!
We Dare To Dream,
Addi & Cassi Hempel
