And she is only eight or nine years old?
It doesn't matter that she has just been diagnosed with a mild case of CMT, a genetic condition that damages peripheral nerves that should pass on commands from the brain to the muscles and pass information to the brain about sensations such as pain, heat, cold, touch — most importantly for balance. All she hears is that the disease is incurable and progressive, meaning a bomb has just been planted in her body that eventually will wreak devastation ranging from an inability to use her hands to being in a wheelchair — or even killing her.
About 3 million people around the world have CMT. Although they carry the offending gene from birth, they generally only begin to manifest symptoms as they age. It is not unusual for the disease to remain undiagnosed for years, since it is often missed by doctors who don't have enough experience with it. People with a a mild enough case might be able to hide the gradual physical impact with braces or orthotics. So there are top business executives, movie stars, perhaps your neighbors, who have CMT -- and you don't know it unless you know what to look for.
Once in a while the disease marches very fast and ruthlessly toward death. While it kills only occasionally, it at times cruelly cripples kids before they have a chance to dance, run, kick, or simply walk in the sunlight.
There is no cure for CMT. One reason is that diseases that affect many more people are better bets for pharma companies because they create a larger market for new drugs. Everyone is touched by cancer in some way; not so many are exposed to the effects of CMT. But there are folks out there trying, and I want you to help them.
Don't send them your rent or auto payment or grocery money. But send them the money you never expected, like a tax refund, or when you paid a bill twice and they returned a check to you. Did a client or vendor just drop a few hundred on dinner to cement your relationship? Send half of what you would have paid to CMT. Take that dish with loose change in it from your dresser or cup holder in your car down to the bank, run it through the coin counter and send that amount to help find a cure. Decide NOT to drop a grand on an industry conference? Give us half of it. You get to deduct it on your taxes.
I know you are asked to support all sorts of worthy causes, from buying Girl Scout cookies to donating to the United Way. Haiti needs to be rebuilt (again). It is Breast Cancer Awareness Month. Your kid wants you to buy wrapping paper to pay for school projects. Your neighbor is canvassing for ALS. Your cousin wants you to support his Fun Run for this cause or that one. But if you can find it in your heart (and wallet) to help find a cure for CMT, the families of these 3 million victims would be eternally grateful.
So would I. You can contribute at http://www.cmtausa.org/donate/make-a-donation/