Carlee was born in 2008 weighing nine pounds – her mom, Kelli, describes her first year as “typical.” “Carlee crawled, could stand some, but she didn’t walk and run like her brother had done,” said Kelli. “At around 15 months, I just knew something was wrong.”
Kelli and Jason, Carlee’s dad, took her to their family pediatrician who said Carlee could be developmentally delayed. “I felt like I needed a second opinion, so we took Carlee to another pediatrician,” said Kelli. “We told her what was going on, and she tested Carlee’s reflexes, but her legs were not reacting. The pediatrician then referred Carlee for testing at a local university children’s hospital.”
Over the next three months, Carlee had an EMG and two MRIs. She also had a muscle biopsy just after her second birthday. Kelli said, “I felt horrible watching her go through those tests, but I knew I needed to find an answer to Carlee’s symptoms. It took six weeks to get the muscle biopsy results, and I’d been calling every day to see when they’d arrive. I had to be proactive.”
On April 19, 2010, Jason and Kelli received a call from Carlee’s pediatric neurologist, who confirmed a genetic diagnosis of spinal muscular atrophy (SMA). “We immediately asked him what the diagnosis meant. As he told us about SMA, we were in disbelief,” said Kelli. “It was such a blur and so overwhelming, the trauma of trying to understand it all. I don’t even know where my mind was that day, but we worked through the initial shock. We knew that we loved our daughter and that SMA wasn’t going to keep us from living our lives as best we could. We knew we had to move on and figure this out.”
Carlee’s parents continued to research and started Carlee in horse therapy to help keep her active. They were also introduced to the local MDA clinic and CureSMA, which helped them learn more about SMA and were the ones that recommended Numotion. Carlee received her first manual wheelchair when she was just two. “I can still remember Carlee’s sweet little face the day she got in her manual chair,” said Kelli. “She was just so excited to be able to get around independently, and I didn’t have to carry her! She started zipping around in that thing as though she’d done it for years, and I wept with joy.”
Carlee, who is now 10, likes to swim, sing, cheer, dress up/make-up, watch YouTube, play outside and watch her brother play baseball. Andy, her ATP, has been with her since the beginning and is the family’s go-to guy for everything. “Andy has been with us since the start, but all of the technicians have been amazing. It feels great knowing I can call in and whomever answers the phone knows how to help us and who we are. We are grateful for each of them,” said Kelli.
While SMA is a horrible diagnosis, Carlee is using it for good and changing lives for the better. “Her smile and the way she does life is so cool,” said Kelli. “She doesn’t want anyone to know when she is hurting and in pain – you will rarely ever see her cry over her pain in public. She has a smile on her face all the time – she is a light to everyone she meets. She is changing the world and for this I am forever in amazement of her.”