I Am so Very Scared for the Day That I Will Have to Say Goodbye to Him

Our story is like many of the others you have received. For us, Duchenne, wasn't even on our radar. In fact, we didn't even know what it was. Wyatt at the time, was our 4th son (we had a 5th son, with the help of IVF after Wyatt was diagnosed). He was like our other boys, a big chubby baby, but like his brothers before him, he put on weight slowly. At about 4 months, our doctor became concerned that although our boys have been slow to meet growth milestones, Wyatt was even more delayed. On top of that, he spit up excessively. We took him to Seattle Children's to see a GI doctor.

After 6 long months, of test after test after test, we got the Duchenne diagnosis. As it turns out my mom, myself and my 19 year old daughter are all carriers of Duchenne. Of our 4 non-IVF sons, Wyatt is the only one who has Duchenne, our 17, 15 and 9 year old boys were spared this terrible disease. Wyatt is only 6 years old and thankfully his symptoms currently are very mild.

I'm telling Wyatt's story, because I am praying everyday for a treatment where I can continue to say that his symptoms are mild. But I know, that any minute or any second that could change forever. I am so very scared for the day that I will have to say goodbye to him. I cry and for the lack of a better word, freak out, about it. I can't even imagine that day. My heart will be broken forever. I can't make Duchenne go away, but please, please, please help Wyatt and all the other boys out there that are dying from Duchenne. I think about if my 17 year old had Duchenne, his life would almost be over, not just beginning.

I know there are researchers working day and night on Duchenne, and I also know that the FDA wants a safe treatment. I hope these two things can meet and save my baby.

Melissa Staffenhagen "honored to be Wyatt's Mama"

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