"Sinceriously" is the new word...
from actor Stephen Amell from the program "Arrow" to describe his new philanthropy campaign to raise support for his pet cause chosen in a poll on his Facebook page. That cause is for Mental Health support. I hope he helps many people, and it is a raging success.
Now, I show a bit of bitterness because a cause I support came in third, and that is Cure SMA, a group of families dedicated to seeking treatment or sure for Spinal Muscular Atrophy. The disease claimed my daughter on March 20th of last year, and many other kids. SMA affects motor neurons, and the best way to explain how it kills our kids is to say that it is like ALS in adults. Spinal muscles degenerate and cannot heal, leading to the eventual weakening of the lungs from either this or an infection that they cannot fight off like a cold or a flu. Children with Type 1 of the disease rarely live to see their first birthday, making their second is a longshot, and any year more than that is nothing short of a miracle. This morning, we lost a beloved Type 1 named Brianna who was an inspiration to my families and many others. Mr. Amell acknowledged Cure Sma in his announcement and promised that help was on its way for our kids, but other kids took his decision not to endorse us very personally.
The reason that they did is that Mr. Amell missed a big opportunity in helping our children, because they overwhelmingly love superheroes in this community. Maybe it is the fantasy element that superhero bodies don't break down, or the hero has unlimited resources, or that he gets the girl. All of those things are what a kid in a wheelchair whose face is contorted from the disease, and cannot even manage a smile because their facial muscles no longer work could never do. So, they love Superman. And Batman. And Iron Man. And...The Green Arrow. They know the actors that play these characters, and hope that maybe they will save the day for them.
SMA is not one of those diseases that has a spokesperson or a powerful advocate. No politician, actor, or musician has really stepped forward to help out kids in a big way. My challenge on this board goes to anyone who is in a position to make a difference to step forward. I know there are some big names that read posts on DU. This especially goes out to you actors who come here who have played superheroes on TV or in the movies. They know you Supermen like the late Christopher Reeve, Brandon Routh, Tom Welling, and Henry Cavill. They know the Batmen like Keaton, Kilmer, Clooney and Bale. They know Perlman played Hellboy. They know you Avengers, Downey, Ruffalo, Johansson, Evans and Renner. The kids are so desperate for representation that the ones who have an eyegaze computer systems have embarked on a campaign to write several celebrities in different fields of entertainment for some help. Their time is very limited on this planet, and they are very disappointed that they aren't being heard. If there is just one big name out there who would donate some of their time to the Cure SMA group, these kids would be grateful for your help beyond your comprehension.
Thank you for reading the rant of a grieving and frustrated bereaved parent.
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