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Kelly Family's Story

Mike and I (Sasha) were married in December of 2012. We are high school sweethearts and have been friends since about the 6th grade. We pretty much only know life with each other and I wouldn’t have it any other way. Since the day we started dating we have been challenged with medical diagnoses. When I was 16 I was diagnosed with Crohn’s disease and spent several days in the hospital with Mike by my side while they figured out what was going on. Over the next couple years he was by my side trying to find medications and lifestyle changes that would help aid in my overall health battling Crohn’s disease.
 
After 8 years of dating Mike finally popped the question at the school gym where we met. Soon after we were married my doctors informed me that it may be difficult for me to conceive due to my health conditions. Little did we know I was already expecting. After a very monitored and overall easy pregnancy our daughter Sutton was born 6 weeks early due to a Crohn’s flair. She spent a month in the NICU and then we were able to bring her home and start our life. After about 6 months of having her home I started to notice that she wasn’t playing with her feet nor moving her legs much. I became very concerned and discussing with doctors what to do next. After about a year of physical therapy and little to no improvement or signs of sitting unassisted, standing, crawling, etc. we became very worried. Finally, after tons of medical testing and no answers we started to look for another opinion.
 
We were referred to a neurologist at the MDA of Omaha and instantly fell in love with his passion, friendliness, and overall concern for our daughter. He spent time getting to know her and us for over an hour by simply playing, looking at photos through her life, etc. I knew instantly we were headed in the right direction. After ordering a few tests he was able to find several genetic mutations that shows Sutton has a very rare and inconclusive form of congenital muscular dystrophy.
 
We have spent the last couple years since her official diagnosis working with the MDA physical and occupational therapists, fundraising teams, and special events to help us adjust to Suttons new expectations. With their help we have been able to access several items through their loan closet to make her life easier, maintain consistent physical therapy in the home, and get to know local families in similar situations.
 
Our family has also grown by one family member. Sutton became a big sister in July 2016 to her sister Leighton! It has been such a blessing watching the two interact and come to love one another unconditionally.
 
Thanks to the MDA of Omaha and all of their professionals we have been able to help raise money for their research through their Muscle Walk, Shamrock Ambassadors, and other local events. Sutton has had assistance getting a manual and powered wheelchair to get around in, bath chair, walking and standing devices, swimming flotations, and overall love and support. We look forward to having them by our side for what lies ahead!

 

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