Small Actions

The world doesn't understand muscular dystrophy. That is probably the first thing you learn after diagnosis. Explaining it and its devastating prognosis is like stabbing yourself repeatedly. That's the second thing you learn. You have to find a way to get the word out it's up to you. That's the 3rd thing you learn.

I don't post this blog, or write about my sons illness on facebook because i want sympathy. I don't need pity because pity will not save Robbie. I need people to know what is happening to not just my family but to thousands of families around the world.  Rare disease is a tough and lonely battle.

If I say cancer you know what I mean. If I say HIV you know what I am talking about. If i say muscular dystrophy you don't understand. That's not to insult you. I didn't get it until I had too. It's not okay for a disease to slowly rob my child of basic functions while the world goes on not understanding.

I have had to gently explain to family members. I have to start talking to my 5 year old about why her brother is different. I have held a 10 year old while she sobbed when the realities of Robbie's disease sunk in. All of that is to be expected but I have also had to explain this to medical professionals. I have had to fight to get changes at his school. I still get phone calls telling me things aren't improving. Like his handwriting or coordination. I have had the transportation people call to ask if he was better.

So I do what I can to get the message out. I will do what ever it takes to make sure someone is hearing me.  I write letters to my house reps and senators. I share everything I can on facebook. I don't hide my emotions ever because people have to see. People have to join me in this fight. This has to happen because it is the only thing my family can do to save our Robbie.

Please understand I know that Robbie's disease is not the most rare of diseases. I know there are so many other things that also need a voice. If somebody decides to make a bunch of people dump a bunch of water on their head and donate money for their charity and it works then they're that much closer to a breakthrough.  If 1 person read about a disease because of that then passes the info they learn on to someone else it will be like a domino effect.  Look at the strives we have made in HIV, Cancer, and numerous other diseases/causes because somebody said something that caused a bunch of other people to stand up and help the cause.

I have seen a lot of people complaining about the ALS bucket challenge. I get what you are saying but I think anything that makes people aware makes us that much closer to a treatment. Imagine being told there is nothing no chance.  What would you do to change that? Would you care how that change came about? Would you be angry that the money that funded the research came from something fun? I wouldn't.

I want to find a cure. I want the world to want to want to find a cure. I want the world to know and I am really sorry if in that quest I annoy you.  I won't stop annoying you. I won't stop trying to save my kid and trying to get other people to join my fight.

I tell my kids this all the time and I truly beleive it. When you look at something tragic you will always see a hero in background doing something simple that saves someone. I tell them this is the thing we take away from the bad stuff like September 11th, or the concetration camps of World War II, even the fight for HIV research.  Small actions can equal giant amounts of progress.