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
This week the wonderful people at KCBS Radio in San Francisco ran a two piece radio report on Niemann Pick Type C. Addi and Cassi were featured in the report along with audio soundbites from Mommy and Daddy…
Thanks a million to KCBS for this thoughtful report and for sharing our kids story on the radio with the Bay Area!
A telephone call from an unknown number came to our house on Friday night. It was Mrs. Claus on the line calling to inform us that Santa would be arriving at our house from the North Pole between 5:30pm and 6:00pm on Christmas Eve to bring Addi and Cassi their Christmas presents. This is the time Santa arrives in Reno and apparently he’s very busy so we better be prepared to take video. Mrs. Claus also reminded us that when Santa leaves the house the girls need to go to the backyard to look for the Rudolph and the rest of the reindeer so they don’t see Kris Kringle getting into his pickup truck!
The kindness people have show us over the past few months is extraordinary to say the least. Yesterday, a friend of mine stopped by with a set of darling CureCaps made by a friend of hers who lives here in Reno. Carol, our friend in Boston, spent two solid weeks knitting CureCaps day and night and is helping us get the word out about Addi and Cassi on the East Coast.
Our friends from Australia offered to donate their beach house and a round of golf at the Royal Melbourne Golf Club, one of the top golf courses in the world, for our fundraiser and silent auction in May 2008. We have received pedicure donations, housecleaning service, the condo on Lake Tahoe…the donations go on and on. Many people are offering their personal time to help us as well. The outpouring of support on so many different levels is incredibly moving and keeps us focused on our goal to conquer cholesterol and beat NPC.
A number of checks have also come to the house to the Addi and Cassi Fund. The donations come in large and small amounts — $10,000, $1,000, $500 and even $10. Many of the checks are coming from people we have never met and they arrive with touching letters of support and encouragement. To everyone this Christmas, we wish you much love, peace and joy.
The Hempel Family