- Posted June 17, 2014 by
Fort Worth, Texas
This iReport is part of an assignment:
Raising a special needs child
Extra Special times 2
My husband Jonathan and I have 2 boys with Duchenne Muscular Dystrophy (DMD). Dakota is 16 years old and Hayden is 10 years old. We found out Dakota had DMD when he was about to turn 4 years old. He couldn't run, only had a fast walk. He had large calf muscles and couldn't climb stairs. All of this prompted us to ask more questions and do more research, which led to blood work and the disease DMD. We got pregnant with Hayden a few years later and while I was still pregnant with him, we had tests ran, which also confirmed DMD. The emotions we had when we found out were very depressing. We had already begun experiencing life with DMD and some of the challenges we were facing, when Hayden was born. Although this didn't make it easier emotionally, because it was like getting the news all over again, once we confirmed through blood test when Hayden was born. You always think that when you have children they're going to do this or do that, and in our case that wasn't it at all. We had to adjust to life differently, with purchasing a full size van with a ramp and lock systems. We go to several different specialists every few months to make sure both boys are doing okay. Dakota is totally dependent on us. He stopped walking at 8 years old and Hayden can still do some things for himself, but he stopped walking sometime this year. They both have power wheelchairs and are able to get around that way. We have the things that we need around the house to lift them and bathe them. They have bright smiles, most of the time, but life frustrates them at times when they can't do what they use to do. (I could only imagine what that feels like). We have been blessed though to be able to get the help we need with insurance and Medicaid. I know there are some families that aren't that fortunate. Regardless of the life expectancy, I put it in God's hands and I pray for a miracle everyday for these boys. That's all we can do. I pray for patience for myself, for my husband and we do what we have to do to take care of these boys the best that we know how and give them the best life possible.