Welcome!

Welcome to the world of Duchenne. Few of us live in this world, many of us feel alone on this path and none of us were given a choice to be here. Yet, here we are trying to make the most of it.

My name is Christi and I have two sons with Duchenne Muscular Dystrophy. I’m also blessed to have a loving husband and a beautiful daughter. Duchenne doesn’t define our lives, but it certainly feels that way sometimes.

When my boys were first diagnosed I felt lost, afraid and completely isolated. Grief, guilt and fear consumed me. I struggled with depression and anxiety, and still do at times. Thankfully, I was able to cling to my faith and find joy in the life we never expected to have. I quickly found a support system, including other parents who understood what it was like to walk in my shoes.

Once we accepted our new life, we were able to focus on beauty and gratitude again. We vowed to give our children the best life possible. We became determined to cherish every moment. Afterall, everyday is a gift.

Our children have taught us so much about life, love, courage and faith. We try to follow thier lead as we navigate each change that comes our way. Not every day is good, but there is good in every day. We cherish and love each other more than we ever thought possible, because of this disease.

I hope you will find encouragement and support here. I know how hard it is to feel like no one knows what you are going through, but I assure you – you are not alone.  

Love and prayers,

-Christi