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Today, Hunter is an active, sweet, loving 8 year old little boy. And, he is ALL BOY. He loves to be outside, stomp (in his own way) in the mud, pick up worms and tinker with Daddy in the shop. He sits with Mommy and tells her how much he loves her and asks Nana “Did you miss me?” when she comes to see him. He adores his cousins and asks to see them every single day. Hunter enjoys school, his amazing team of teachers and his friends. He loves to play his version of hide and seek, tag and cars. However, the way he walks, gets up from the floor, “jumps”, sits, lifts his arms and general movement is not typical for an 8 year old boy. The way he eats, communicates and plays is not typical for an 8 year old boy, either. Hunter has Duchenne Muscular Dystrophy.
To say his diagnosis at 8 months was a shock, would be a complete understatement. At birth, everything appeared fine, but within the first few months it was obvious that something “was off”. Our hope was that with a little physical therapy, he would catch up and move past the delays. That did not happen. Fortunately, we had an amazing pediatrician that ordered blood work at 6 months and we soon knew he had an elevated CPK (which indicated some type of dystrophy).
After genetic testing, it was determined that Hunter has Duchenne Muscular Dystrophy. The first couple of years were filled with the deepest grief imaginable. Facing the reality that this beautiful little soul, our son/grandson/nephew/cousin/friend was facing a life ending disease seemed unsurmountable. To know he would face such hardships, the knowing that there was no cure and very few therapies, the absolute feeling of helplessness is hard to describe even today.
We watched Hunter meet his milestones, but always months behind. We watched him fall, over and over again. We watch him not be able to keep up with peers and get so frustrated. We watch him be confused and so cautious. We see him work so hard to achieve the things he wants to do! We also see him gain confidence. For everything we thought might not ever happen, it did (not in typical fashion, but in Hunter’s way)! So we celebrate and savor every moment that we have right now of him being ambulatory.
Hunter is in the “honeymoon” years of duchenne right now. Sometimes this disease tricks us into believing that it won’t progress and we actually take that as a win, because it’s too hard to acknowledge the reality of his future. But we know that it will soon begin to rob him of his mobility and so much more.
Not only does Hunter struggle with his motor abilities, but he also has cognitive delays, due to the specific genes affected in his mutation. These delays affect his communication, interactions with peers, learning abilities, behavior and every facet of his life. We would not change anything about our precious boy, except his future. We can handle the cognitive issues, as frustrating as they may be, but what really brings us to our knees is the havoc that Duchenne muscular dystrophy wreaks on his body.
We have to be honest. There are many days that this diagnosis shatters us to the point it is hard to breath, hard to get out of bed, hard to sleep, hard to keep the anxiety under control. Knowing that today, we don’t have a cure and very few effective therapies is devastating to digest. Hunter is our life! He is a joy and a beautiful child of God. We live everyday in “anticipatory” grief. Sadly, there are days that Duchenne wins, but we try to stay strong. We embrace our faith, know that we are never alone and work hard to move forward. We make a conscious decision every day to hold onto HOPE!
There is very little that we can do to control Duchenne, but we will not sit back and do nothing. We will fight with every fiber of our being to make his life happy and joy filled. We will fight every day to find a cure and therapies to reduce duchenne’s impact on him. We will fight for every precious son in this community to have the resources they need to improve their care and quality of life. We will fight to have the best healthcare available in our immediate area. We will raise awareness in the hopes of making our world more kind and more accepting for those that are fighting to live with Duchenne.
If I, Hunter’s Nana, could give him my muscles, my heart, my lungs to save him I would do so in a heart beat. But today, that is not possible. So I will do any and everything I can, through Hunter’s Hope for Duchenne Muscular Dystrophy and DEGS 1 Leukodystophy, with the help of our Board of Directors, this beautiful community in which we live and YOU!