Colin's Story

As a baby, Colin was very loving and easy-going. Even though he rolled over and crawled late, we were continuously told  "not to worry" and that "he will catch up". For most, this is true; however, Colin didn't start walking until 18 months.  At that time, we decided to seek an orthopedic.  After examinations from doctors and specialists, it was determined that Colin might have Cerebral Palsy.  We decided to visit a neurologist for a MRI to confirm the diagnosis.  Within minutes, the Neurologist ruled out CP and decided to run blood work.  On June 28th, 2013 we received that devastating phone call from the doctor telling us that Colin had Muscular Dystrophy.  We had no idea what Muscular Dystrophy was and what it meant for our young son.  For weeks, we spent all of our time researching this diagnosis. Colin was later diagnosed with Duchenne Muscular Dystrophy (DMD), the most aggressive type. For boys with DMD, their muscles will slowly waste away.  Between the ages of 10-12, most are bound to a wheelchair.  The most difficult part for us to digest is no cure is currently available.    We are determined to help find a cure for boys with DMD. 

Prayers were answered when Colin was accepted to take part of a clinical trial with Serepta Therapeutics.  The experimental treatment uses exon skipping technology to hopefully create a semi-functional dystrophin protein within his body.  He was going to Cincinnati Children's Hospital weekly for the infusions.  After two years into the trail, a wonderful home nurse began administering the infusion at home. The trial is a four year commitment; however, the drug was attacking Colin's kidneys and we were advised to end the trail after three years.  Colin continues taking a weekend dosage of Emflaza, a steroid.  With this treatment, Colin has been maintaining his strength and agility. Steroids only delay the onset of this disease by a few years.  In addition, Colin uses a Stander to help maintain his flexibility and a cough assist machine to help his lungs to expand and work at full function.  

Today, Colin is like most 13 year old boys. He is very bright and witty.  In 2021, Colin started using a wheelchair and now relies on a power wheelchair for mobility.  He still enjoys the outdoors and fishing with his dad and friends.  Most of all, he loves his sister.  He knows that there are things he cannot do that his classmates and friends can; however, he remains extremely positive.  At school, he is surrounded by amazing teachers and staff that accommodate every need and classmates that jump in to help Colin without hesitation.  Colin manages the school basketball team and loves being included with the team.   We know there will be many challenges ahead of us, but Colin reassures us by staying positive.  Hope and prayers continue to be our emphasis toward finding a cure.  We are blessed to have a wonderful support team in our family, friends, doctors, teachers, and physical therapists.  Please help us with this fight against Duchenne Muscular Dystrophy. In order to find a cure, we need your help to raise awareness and funding for research.