Monday, September 7, 2015

Duchenne Muscular Dystrophy Awareness Day - Supporting Each Other

September 7th is Duchenne Muscular Dystrophy Awareness Day.


Duchenne, or DMD is a progressive genetic disease that affects 1 in 3,500 boys. It can come into any family. It knows no boundaries. It does not care about your race, where you live, if you have a family history or not - It can happen to any family!

It happened to us. We had no idea until Ryan was almost 5 that he was born with this genetic disease. The phone call with the diagnosis was a complete shock!  The diagnosis itself is one of the hardest things you will ever hear. Being told there is nothing you can do to stop the disease, there is no treatment or cure, makes it the worse thing you will ever hear.

Why raise awareness?  As a parent of a son with Duchenne, you feel helpless. There is nothing you can physically do to stop the decline of the disease. What we can do is push for awareness. As we have all witnessed, those things that have the most exposure tend to get the most attention. We are hoping that more exposure will mean a push for more research, which will hopefully one day SOON bring hope to DMD families, and to our son Ryan. 

SOON is the big word here. We don’t have the luxury of time on our side.  A very difficult fact of this disease - It is 100% fatal.  Our boys slowly lose the ability to walk, lift their arms, use their hands, hug, and breath. They become completely dependent, needing 24/7 care. DMD causes our boys to die at a young age. Young, meaning most don’t live to see their mid-20's.  Ryan is almost 18 years old. As a mom, can you imagine how that makes me feel. This is our reality.  According to his diagnosis, at only 18 yrs old my son has already lived three-fourths of his life. 

My continued pray is wisdom for those working so hard to find treatments for this disease. We hold onto hope in a cure, yet know our true, unconditional, eternal hope is only found through Jesus.  I pray that we will share that Hope we find in Christ with others who may not know him.

 Psalms 10:17 (NLT)
LORD, you know the hopes of the helpless. Surely you will hear their cries and comfort them.

Father, 
I pray today for those affected by Duchenne's. I know how hard it is to watch your child slowly lose all strength. The grief at times becomes almost unbearable. I pray that you will surround us with your love, bring peace that passes understand to our hearts. I pray that you give us the strength we need to get through each day. Show us in a very real way that you are here , that you have not forgotten our children.  
In Jesus name,
Amen


For more information about Duchenne:
www.parentprojectmd.org
http://www.raredr.com/news/duchenne-muscular-dystroph-rare-disease-quick-facts


Photo Credit: Endduchenne.org

2 comments:

  1. You are so brave Donna. Thank you for sharing this with everyone including me. May the Lord bless you and your family as you care for Ryan. Cindy

    ReplyDelete
  2. Cindy, thank you for taking the time to read it. It is a hard thing to share but important for people to understand why we feel such a strong push for research.

    ReplyDelete