Today marks one year since we received Levi’s diagnoses of Duchenne Muscular Dystrophy. I can’t say that it’s gotten easier to accept but I think we are learning how to live with it. Of course we still have trying times and we don’t know what the future holds but I’m learning to accept the unknown. For me, it’s hard because I need to know the outcome. I need to know the plan and with Duchenne there is no plan.
When he was first diagnosed, I literally felt my heart break. I can’t describe the pain in any other way. “Not my baby” I kept saying over and over to myself. I couldn’t bare it. I wanted to take it away. I prayed for God to give it to me instead, but that mysterious God of ours must have not heard me.
When Levi was born, my life was complete. I had a beautiful baby girl and now my beautiful baby boy to complete our family unit. I mean, how cute are these two?
When I was told that Levi may not be around for more than his late teens or early twenties I flew into Momma Bear Mode. Those words did not compute with me. Their treatment plan was a joke, to me. NO CURE? What does that even mean? It means I was doing a ton of research day and night. I feel like all that digging and research and the late nights crying at the computer screen paid off. I found the answer to my prayers, for the time being, in the VECTTOR. With no harsh side effects and video proof that it was working for other patients, I couldn’t pass up the opportunity to try this treatment. A year later, here we are still seeing results and improvements. No, it’s not a cure, but it has given Levi energy, restful sleep, a bigger appetite, and so much more. This is our treatment until a cure is found.
I can say that my superhero is my son. I think of all that he goes through on a daily basis and how much he still shines. He still smiles, he is still thoughtful of others, and he is always giving hugs and saying “I love you” as many times a day as he can. When I think of the future it does scare me but I know that Levi has touched and will continue to touch the lives of everyone around him.
Levi never throws a pity party for himself and he’s always telling us how he’s going to be the next Spider Man. As a mother, I want to see that. The only way to see that is if we find a cure for Duchenne. We have to invest in the companies that are using CUTTING EDGE SCIENCE. Exon Skipping and Stem Cell Therapy are getting close. We have to stay on the front line for our children. If we don’t, we may let a cure slip away before we knew it existed.
Take your sadness and your anger and let’s channel it into something positive! Let’s be the thorn in the side of BigPharma and the FDA. Put the pressure on them to get the ball rolling on some of this amazing science. If they can approve pills that cause problems they can approve pills that help. I can’t stand to see another boy lose his life while we wait for these muti-million dollar corporations to fund the science and the right trials.
I would say that an army of moms would be pretty scary. Let’s show them that we won’t sit idly by and wait for them to pull their thumbs out of their butts. The time for a cure is NOW. I won’t stop fighting until Duchenne is GONE and I will say good riddance to it with a HUGE smile on my face….
so that I can see THIS SMILE for the rest of my life.