It has been my great privilege the last few weeks to be working on our Oprah project. The response was amazing--we got over 100 letters from about 45 different SMA-affected families. It has been an honor to receive these letters and glance through them to catch the kiddo's name to keep track of who we received letters from.
I have also read many of them. I hope no one is angry about that...but with so many adorable pictures, I couldn't resist. I wanted to know these people, people whom I greatly admire and share a large amount of sorrow with. Sorrow, I have found, is a powerful friendship-builder.
I have been so touched by these letters...but I am angry too. The more letters I read, the angrier I got. I shouldn't have to be doing this--there should be no SMA. These children should be playing on swings and running in the park. They should be kicking soccer balls and eating ice cream and planning Halloween parties. They should not be struggling just to sit up, or walk. When the disease is so understood, and so close to treatment, why are we wasting money on corrupt organizations and horse contraceptives and bailing out executives that could pay for the UC Irvine stem cell trials with the change in their couches?!?!
I am so angry! Angry at this disease that is taking these children, that took my son's ability to breathe and walk. Angry that instead of playing with friends, he is inside away from the germs. Angry that I am watching him with a nervous eye, fearful of any sign of progressing weakness, instead of playing in the autumn leaves with him.
Reading these letters has given me new purpose. I will not take my last breath until this disease is eradicated. Gone. Destroyed, a memory only.
Forgive me the vent. I'm just really upset.