About us

Every parent hopes that when their baby is born that the baby is healthy. When Chris was born, his parents saw a healthy baby boy that they loved with all their heart. It wasn’t until Chris was growing and missing milestones that they realized there was a problem with their son. When Chris was about 18 months old, they were informed that he had spinal muscular atrophy (SMA). At this age, it is a bad sign. Many children diagnosed at a young age have serious health issues and typically don’t live long lives. His parents were told to prepare for the worst, but how does a parent even prepare for this possibility? Chris’ parents chose to let him enjoy his childhood and treat him as “normal” as possible. Chris grew up surrounded by family and friends that did not treat him differently because of his limitations. SMA may have been weakening his muscles, but those surrounding Chris were not about to let it control his life. These people wanted to bring awareness to those outside of their circle about this rare disease. The community embraced Chris, learned about the rare disease, and worked to include him in as much as possible.

When Chris was young he was Kentucky’s poster child for the MDA (Muscular Dystrophy Association). He was able to partake in the local telethon, guest DJ on a radio station, and meet the governor. These were great events while he was young, but as Chris grew up, he stopped wanting the attention his disease and wheelchair brought. He wants to blend into the crowd, but that just hasn’t been possible yet.

Chris and I (Brandie) met in high school. He was a senior while I was just a freshman. While our reasons for dating were not similar, God had plans for us to stay together. We have had difficulties like most couples, but we have always overcome them and grown stronger in the process. We have learned to adapt when needed, especially when it comes to the limitations a wheelchair brings. We hope with this medication, that there will be new challenges that we will need to figure out. Challenges bring growth and renewed strength.

Fourteen years ago, we were blessed with a miracle in the form of a daughter. Katie is a gift from God that we were not expecting but have loved since before she was born. Katie learned at a young age that life in our home was different than her friends’ homes. Her dad was there but not able to physically help her. She has adapted and learned to be more inclusive of all people no matter what their ability level is. She has also been an advocate for those that are misunderstood or mistreated. She has a big heart for helping those in need, and I hope she always has it.

This is just a small glimpse of us, but I hope it gives you an idea of who you are reading about.