Henry was born in May of 2005 and he is a sweet little boy full of happiness and energy! He started walking when he was 16 months old, he never really crawled, when he did, he didn't make it very far. When we would stand up from the floor, he would work his way up his legs. It always reminded me of how a man in his 80's might stand up from the floor. Little did I know, this was called the "Gouwers Movement". Henry was diagnosed with Duchenne Muscular Dystrophy at the age of 4 and it was one of many life changing events. Our dreams we had for our little boy had been destroyed, but we loved him none the less. So we found new dreams for our little guy, to have as much fun with him as we can during the short time we have with him. For those of you who have never heard of Duchenne Muscular Dystrophy, it is a terminal disease that only attacks boys and is passed on by the mother through a gene that failed to produce dystrophine (forgive me if I spelled that wrong) to the baby during growth in the womb. Most boys, like Henry, their life expectancy is to the age of 20, maybe 30. There is a rule of thumb with this disease, the longer they walk, the longer they live. I lost my brother to this horrible disease when he was 19 years old, 2 months before his 20th birthday. At the time, I was only 11. My brother was my best friend and there isn't a day that goes by that I don't say good morning and good night to him!
In April of 2014, our lives once again changed. Henry fell at school fracturing is tibia and fibula in his right leg and we were devastated, Ron and I knew the outcome. His leg healed in four weeks, but he had already lost so much strength in his legs, no matter how much therapy we did he just couldn't stand anymore. There is only a short window to get him back up and walking agaom, but it just didn't happen and now that window has passed. Henry is okay with not walking anymore, he said "I didn't like walking mom, because I always fell." Every year at school Henry endured a nasty fall, a total of three times. First grade and second grade, he fell and fractured his nose. Then his leg in the third grade. Needless to say, he really doesn't like school!
Henry doesn't speak much outside of home. His Neurologist says that Henry has Selective Mute-ism which is caused from anxiety, the anxiety is caused from him not understanding what is going on with his body. This is just how he has chosen to deal with it. Some boys act out with pure anger, so we aren't going to complain about him choosing to be silent. He'll be more social as he becomes more aware of what is going on with his body. Henry had no idea that his disease is terminal and we are in no hurry to tell him. We will cross that bridge when we get to it.
Henry has an older sister, Lucy. He loves his sister so much, I think he would be lost without her. They spend a lot of time together watching TV like Pokemon, Adventure time, Naruto, etc. They also play a lot of video games together, Minecraft and Halo are his favorite. Henry's most favorite thing to do is build with his Lego's. He loves his Lego's, he couldn't be happier when he is creating something cool with them. Henry also has a huge love for cats, we have three of them, two dogs, and a very old rabbit. For a few years, Henry was totally convinced that he was part cat! Our cats make him happy, especially our cat Malcolm. He pretty much lets Henry do what he wants, mostly cuddles!
This is just a little bit about Henry. Each day there is a new challenge and we put these challenges, our lives, and our future in God's hands. It's how we get through everything, everyday, through God! Without God, we would be lost, sad, and we would never see the light that is waiting for us at the end of our tunnel! It's how we stay positive!
In April of 2014, our lives once again changed. Henry fell at school fracturing is tibia and fibula in his right leg and we were devastated, Ron and I knew the outcome. His leg healed in four weeks, but he had already lost so much strength in his legs, no matter how much therapy we did he just couldn't stand anymore. There is only a short window to get him back up and walking agaom, but it just didn't happen and now that window has passed. Henry is okay with not walking anymore, he said "I didn't like walking mom, because I always fell." Every year at school Henry endured a nasty fall, a total of three times. First grade and second grade, he fell and fractured his nose. Then his leg in the third grade. Needless to say, he really doesn't like school!
Henry doesn't speak much outside of home. His Neurologist says that Henry has Selective Mute-ism which is caused from anxiety, the anxiety is caused from him not understanding what is going on with his body. This is just how he has chosen to deal with it. Some boys act out with pure anger, so we aren't going to complain about him choosing to be silent. He'll be more social as he becomes more aware of what is going on with his body. Henry had no idea that his disease is terminal and we are in no hurry to tell him. We will cross that bridge when we get to it.
Henry has an older sister, Lucy. He loves his sister so much, I think he would be lost without her. They spend a lot of time together watching TV like Pokemon, Adventure time, Naruto, etc. They also play a lot of video games together, Minecraft and Halo are his favorite. Henry's most favorite thing to do is build with his Lego's. He loves his Lego's, he couldn't be happier when he is creating something cool with them. Henry also has a huge love for cats, we have three of them, two dogs, and a very old rabbit. For a few years, Henry was totally convinced that he was part cat! Our cats make him happy, especially our cat Malcolm. He pretty much lets Henry do what he wants, mostly cuddles!
This is just a little bit about Henry. Each day there is a new challenge and we put these challenges, our lives, and our future in God's hands. It's how we get through everything, everyday, through God! Without God, we would be lost, sad, and we would never see the light that is waiting for us at the end of our tunnel! It's how we stay positive!