Celebrations.....

Recently we celebrated our son Jack’s 1st birthday, Jack does not have DMD but his Brother Kye who is 2 and a half does, while it great celebrating this milestone in Jack’s life I couldn’t help but feel a little sad watching Jack starting to walk 3 months earlier than his brother did, watching how easily Jack can climb up on things the differences are very noticeable and I have to be honest and say while I am so glad Little Jack didn’t get the gene I do feel sad for Kye.

We are trying to work out what to buy for Xmas for our kids we were going to buy a swing set or piece of climbing equipment for the back yard but are second guessing that decision, Is it wrong for me to know want to put anything in our yard that will be a struggle for our boy but then I think that isn’t fair to Jack who can do all these things and won’t struggle with them??

Sometimes this Disease is just so hard, my boy is nearly three and I can see the signs of DMD taking effect on his little body is it wrong for me to not want to put him on steroids because I don’t want him to gain weight or get a moon face, I don’t want him to stand crooked and walk funny and no I’m not a superficial person and I know looks do not define who we are but I do know the ridicule and torment that this world gives to people for not looking so called “NORMAL”.

People who know me well know that this disease does not get me down to often that I am usually very positive and feel that getting depressed and stressed doesn’t benefit my son at all or any of my children, I just am angry that my boy has to deal with this stuff and yes I had him knowing he would deal with this stuff and I wouldn’t be normal to not feel some guilt at times, I get so angry that this faulty gene was passed onto me I ask myself a lot why me, however I don’t ever wish I made a different choice I love my little man he is so unique and perfect to me as are all my children.

People just don’t understand unless they are living the same life, people will make comments about things like doesn’t he like to climb, or just let him go he’ll be fine they just don’t understand that he can’t climb the ladder to the slippery slide without help, he can’t walk down the steep incline on the playground without holding someone’s hand I know people are genuinely ignorant to DMD as they don’t live the journey and Kye is the first person some people have met with it. I just feel sometimes that people take it for granted that their children can do these things without a problem I don’t begrudge them that I am so happy their children are healthy inside and out.

I just want to make my friends and family aware that there are things about this disease that you don’t understand and I want you to be open to learning more about it, DMD can happen to anyone every woman on this planet has a risk of having a child with DMD you DO NOT have to carry it or have a family history of it for your child to be affected 1 in 3500 boys and some girls are born with DMD. A huge percentage of Women who have Babies affected with DMD are NOT Carriers, Genetic Mutations can occur in All pregnancies, I know a lot of people don’t even consider that their child could be born with DMD because I know a lot of people have the assumption that you have to carry this genetic fault to have a child with DMD which just isn’t true and I want people to be more aware of this because it could happen to anyone.

World Wide there is Approximately 1, 039,133 Males Affected by DMD, this number is based on the current Male Population of the world and does not include the girls who also suffer from DMD, that more than a million people making DMD the biggest FATAL Genetic Disease in the world, We need to find a cure and we need more people to be aware of what DMD is and how it affects the individuals who suffer from this disease and their families.