Then I stop and think about those who are not as fortunate.
I have several friends who are fighting cancer. My friend Nancy lost her second breast to cancer last year. My friend Anne’s daughter lost one as well. My daughter-in-law’s sister lost one and another sister is fighting the battle. Two years ago I lost a high school classmate to brain cancer and another classmate to stomach cancer. Seems it’s never ending. The big C is everywhere these days
Then there are the unexpected tragedies that really hit home. My friend Christine lost her son Jason to an undetected heart condition. He was away at college and was found dead by one of his roommates. A seemingly healthy, handsome young man lost his life way too young. I cannot think of a worse fate for his parents and brothers. Losing a child at any age is horrible.
But the situation that has to be the cruelest is to learn that your child has a fatal illness with no hope of cure and that he or she will deteriorate for years before they die. Isn’t that nature’s injustice? You watch as your child goes from a vibrant teenager to a totally incapacitated young person devoured by a disease called LaFora. It is a rare disease with few cases in the world. One such case is Chelsea Gerber of Danville, CA.
Most of us have never heard of LaFora. Until I met Linda Gerber several yeas ago, I certainly hadn’t. Everyone who comes down with LaFora (usually in early teens) dies ten to fifteen years later. Imagine your role as a parent trying to give long term care.
Yes, there are some scientists working on the cure but with such a small need compared to those fighting cancer this disease does not have a huge support network. It is an orphan disease. Still, if it was your child afflicted, you would do everything to bring attention to it and get donations for research.
That’s what Linda and Howard Gerber, parents of Chelsea, have been doing – big time! .
They started a website called Chelsea’s Hope which connects the families who share this disease as well as raise awareness and donations. The Gerbers have raised thousands for the scientists working on LaFora. This is the race they live with – a cure for Chelsea before it is too late. That is the hope.
I think about the Gerbers often and I admire their determination against terrible odds. Thinking about Chelsea makes me appreciate my health and the good health of all my family. One can never take good health for granted when it can go away so quickly.
To learn more about Chelsea and LaFora, please go to www.Chelsea’s Hope.
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