Wednesday, June 6, 2012


A friend of mine lost her 14 yr old son to Duchennes  and asked that we all help to spread the word that a cure needs to be found. So I am telling my story to help you understand what having a child with dmd is like, and why the urgency is needed for an effective treatment or cure to be found.

Most boys with dmd are diagnosed when they are around 4. Until that point you really don't notice very many differences between your son and other boys.  Ryan was 4 1/2 when i started to notice little changes. He was having a harder  time getting up off the floor , climbing steps and keeping up with his older brothers. He  start to complain about being tired. I took him to the doctor not really expecting anything to be wrong, until the  phone call from the doctor came  that changed our lives forever. The doctor says" I am sorry, your son has Duchennes Muscular Dystrophy. there is currently no treatment or cure and it is 100% fatal".

When your sons is diagnosed with Duchennes you are given details about what his life will be like with Duchennes Muscular Dystrophy.  I would call it a "blueprint" laying out exactly what his  life will be like.  At first you think, well we are going to be different.  God is going to keep Ryan strong.  Ryan won't be like all the others. Then year after year you watch as he is marking off all the milestones on the" blueprints", you try to maintain hope once again that God will intervene, that a cure would be found and yet he stops walking.  Each birthday comes with mixed emotions. Birthdays are a time of celebration, celebrating another year older, another step towards being independent.  For us birthdays are different, hard. Yes you are thankful for your son and yet you realize being another year older means 1 less year of life. You look back at the past year seeing all the changes he has made and know , thanks to the "blueprints", that the coming year will mean helping him to deal with more loss. Ryan is almost 15, an age most boys are starting drivers ed., looking to buy their first car, starting high school and spending more and more time with friends.  Ryan will never drive, in fact his wheelchair costs more than a new car.  According to the "blueprints", we will be lucky if he lives to graduate high school.

God has not chosen to heal Ryan at this point, he is allowing us to go through all the struggles, pain and difficulties , he has not sheltered us from any of it. Ryan lost the ability to walk at age 10,  just at the age the "blue prints" said he would, Ryan ended up needing back surgery at 13 yrs old just as  the "blue Prints" said he would. Now we know, thanks to the "blueprints" what we have to look forward to next.

While God has not healed Ryan let me tell you what he has done. He has been with us every moment, every step of the way.  Even though at the time we felt very much alone I can look back and see very specific ways he showed us he has not forgotten us. He has changed me in a way that I would have never been changed otherwise. He has opened my eyes to see people in a different way, to see the hurt and pain that others are going through and has given me compassion that I never thought I could have. He is continuing to change me as I struggle with selfishness.

God is with us and has used dmd to change us in ways we couldn't have imagined , yet I  will never stop praying for a cure. Duchennes needs to end, no one should have to watch their son  go through what our boys have to go through.  I do know that a cure is not Ryan's only hope.  God is showing me that  this world  is only temporary, only a stepping stone  to something greater and eternal with him in heaven forever!!   THAT is the only thing that gets me through some of the more difficult days ( and there are many of them). Knowing  Ryan has a forever home in heaven that we don't have to try and hold onto this life with everything we have, that a life much better, less painful awaits all of us . THAT is truth!  While I don't have what you call scientific evidence that God exists , I do have the strength to face each milestone as they come and while they are very difficult they do not destroy us. We have the strength to get up out of bed knowing what the "blueprints" say will come next, THAT is how I know that God is real!

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