Colton was born 02-10-2015 – 6 weeks early. After his birth we spent 10 days in the NICU getting our boy healthy enough to bring home. When we finally came home, everything was perfect. We had our daughter, our son, and our dogs. Life was perfect. In May of 2015 – at just 3 months old – we had a routine pediatrician visit. They told us his breathing looked “off” and they sent us to Children’s Hospital of Pittsburgh for further evaluation. After taking chest X-rays, we were told everything was fine and we were sent home. A few days later, I just knew something wasn’t right and went back to the ER. That is when our world spiraled.

 Since Colton did not have much movement, the doctors wanted to do some further testing. After many tests and pokes and prods, the doctors said Colton needed an EMG (Electromyography). That is when we first heard the words Spinal Muscular Atrophy (SMA). Our EMG was scheduled for May 22nd, 2015. We took Colton home. We cried, we sobbed, we prayed and held each other close. Thinking to ourselves, “How could this be real life? He is so perfect”.

 When we arrived at our EMG test in the early morning on May 22nd, 2025, the neurologist entered the room with tears in her eyes. She told us there is no need to perform the EMG. Colton’s bloodwork came back and confirmed that he had Spinal Muscular Atrophy. Instant ringing in the ears and I don’t believe we heard another thing the doctor said in that appointment besides “Take your boy home and love him. There is no cure, no treatment. He will not see his first birthday.” Our world was completely shattered. After hours of crying and holding our boy, we decided we were not going to accept that. We will fight. We will be Colton’s strength. We will be Colton’s voice.

 After using the hashtag #SMA on Instagram, we found our hope. There were many photos of children with SMA, and they were ALIVE! In all age ranges. We quickly reached out to find out what they were doing and learned more than any doctor would have ever taught us! We got on the phone - day and night - making appointments for Colton to see the best of the best for SMA. Learning every machine he needed to live, reading about SMA, looking everything up to figure out what we could do to give Colton the best life, whether that was 6 months or 6 years. We didn't know how long we would have, but we knew every day mattered and every day was a blessing. We looked up how to use a cough assist machine, how to suction, a special SMA diet, learning settings on a ventilator for him to breathe. Colton needs ICU equipment to live. He has a pulse ox on 24/7, connected to a ventilator to breathe 24/7, a cough assist machine to clear his airway, suction machine to clear his trach and oral secretions, a feeding pump so he can be fed, and it runs continuously 24/7. He does require 24/7 care. 

We have always been very proactive in Colton’s care with SMA and leaning all the ways to give him the very best! It has not been easy, but it has been so beautiful and such an amazing gift. 

 Fast forward to the present day. Colton just celebrated his 9th birthday. He is just like a typical 9-year-old boy. SMA does not affect the mind – only his body. He has friends, he has favorite TV shows and toys, and he enjoys video games. He loves books. He loves playing pranks. He loves to travel. Loves his siblings and family. Colton has quite a sense of humor once you get to know him! He is super funny! 

 To avoid germs and lengthy hospital stays Colton is home schooled. For a growing boy with SMA comes bigger wheelchairs, bigger bath chairs, bigger beds, and tighter spaces in our small ranch home. Our home needs renovations for quality-of-life improvements for Colton and his 2 sisters. Wider door frames, a bigger bathroom with walk-in shower and wider entrances into the home are much needed. More space to store all our medical equipment and supplies. 

All proceeds generated through fundraising will be used for these improvements.