It’s hard for me to believe that September is just around the corner. It’s been such a strange time. You will all remember that at this time, our towns, cities, states, and country are battling the COVID-19 virus. The TVs are showing the lonely death stricken people face, strapped to respirators because their muscles just can’t do the work needed to keep the patient breathing on his/her own. All because a treatment or a cure hasn’t yet been found for this terrible disease. But there is hope, because so much money is being put toward finding one or both of those!
As I looked at those pictures, I was reminded of my ex-husband’s last years of life… and thinking about how that is how my Casey will end up: no treatments, no cures. And what’s worse, is that no one is even looking.
I asked Siri for some data on other forms of MD that you may be familiar with such as Duchenne’s (considered rare with 1/3,500 male births worldwide…0.0288%. You may have also heard of Limb-Girdle MD, that strikes between 1/14,500 to 1/123,000. In each case, Siri was able to find data on the National Organization of Rare Diseases website.
But when I asked Siri to find data on Hereditary Myopathy with Early Respiratory failure, information from NORD didn’t even show up on the registered rare disease site. In fact, the only page with any information was found on the NIH page, that I had them put up because it wasn’t listed there either.
Despite all the odds working against us, I continue to feel optimistic about raising the funds necessary to get the three researchers started on Casey’s Cure. I believe that the community will support her necessary research, because they’d want us to do if for one of their own.
Here’s a video I made, to help you see my point of view: https://vimeo.com/gpsstudios/review/451265392/9d213fbee2
Please give so my daughter can live.