Rare Disease Takes Priority Over Vote

Reno Gazette Journal
Rare disease takes priority over vote
January 20, 2008

While most Americans are focusing on narrowing the list of candidates for the office of the presidency, I have found myself preoccupied with another serious issue. My friends Chris and Hugh Hempel discovered that their identical twin daughters, Addi and Cassi, have a rare and incurable disease called Neimann Pick Type C (NPC). The family has begun a long, hard journey to find a cure. A group has come together to do a fund-raiser in May that will help with the research on this illness. While I believe that the election is of utmost importance, and I will certainly participate in the political process, I hope that this community will join us in the fight to save these little girls’ lives. I recently found myself disenchanted with the slate of candidates for the office of presidency. I criticized every presidential candidate while I conversed with my husband. I then realized that I have not felt at ease since hearing the devastating news from our friends.

I know that the office of the presidency is the most important one in the country, and I hope that the best person wins the election, but I will be working with a group of friends to understand this disease, plan a fundraiser for research, and help Addi and Cassi while they undergo multiple treatments. Two years ago, the girls had enlarged spleens. When their health problems continued, their parents took them to Stanford and it took some time to isolate the problem. Yet no one was prepared to hear the news that the girls had a severe disease. We all cried. Neimann Pick is a group of inherited metabolic disorders referred to as leukodystrophies or a lipid storage disease in which harmful amounts of fatty substances or cholesterol are accumulated in the liver, spleen, lungs, bone marrow and the brain. Some of the progressive symptoms include lack of muscle coordination, learning problems, loss of muscle tone, slurred speech and swallowing problems. The children can also develop a childhood form of Alzheimer’s. 

While there is no cure, there is research being conducted that may help the girls and in the end will help others who have problems with cholesterol and Alzheimer’s. The National Institutes of Health is following the girls. There are many research projects under way to find a cure for NPC. The girls are receiving a medication that normally would cost $160,000 a year for both of them. There are children with NPC who do not have access to these treatments. Thus, a group has come together under the direction of one of our neighbors, Maria Muzea, to put together a fund-raiser to be held May 10 in Reno. Interested participants can contact The Hempels at www.AddiandCassi.com.  So, as you move forward with the election, please keep these children in mind as well as the need to find new treatments for many diseases.

Ellie Lopez-Bowlan is a regular contributor to Voices