Baylor Scotting

When Baylor was born on Halloween of 2019, we had no reason to suspect that there was anything different about our beautiful baby boy. But when Baylor quickly developed internal bleeding in his head, we began our complex and distressing journey toward a diagnosis. After 43 blood product transfusions within Baylor’s first 2 weeks of life, preparation for a liver transplant, an incorrect diagnosis of Dandy-Walker syndrome, and more uninformative tests, we still didn’t have the answers we needed. Those answers did not come until our 6–month appointment when Baylor was approved for whole-exome genetic testing. 

The fateful phone call through which we learned Baylor had a mutation in the SUMF1 gene finally provided the answers we had desperately been searching for, but it also disclosed devastating news. Although we were told not to search the internet for information on his condition, we shortly learned that Baylor’s mutation causes Multiple Sulfatase Deficiency (MSD), and there is no cure. Upon finding the United MSD Foundation’s website and learning the stories of other families, we realized that Baylor looked more like the kids pictured on the website than his brother. That was when we knew for sure that this was happening to our son. It felt like the end. Thankfully, we were able to connect with Amber Olsen, the founder of the United MSD Foundation, on a personal Zoom call 5 days after Baylor’s diagnosis and gain access to support and resources for managing Baylor’s care. 

Baylor has a cousin who is only 2 weeks older than him, and as they both grow up, we see the effects of MSD. While his cousin begins walking, talking, and playing with dolls, Baylor will never stand. He is losing his sight, hearing, and his ability to swallow. He doesn’t tip over anymore because he can’t do anything. No sitting, rolling, or crawling. With a healthcare team of 7 therapists and 21 doctors managed by Baylor’s fantastic primary care provider, we try to give him the best life possible. Baylor’s dad, Tyler, has reduced the number of days he works and I (Baylor’s mom, Stormi) stay home to take care of Baylor and take him to his therapy and doctors’ appointments. Baylor also receives 32 hours of nursing care per week to manage the effects of MSD, as well as Baylor’s rare heart condition. Baylor typically wakes up 6 times per night, and in the mornings, we do his care routine involving brushing his hair, giving him medications, applying lotion for MSD-related skin issues (2-3x per day), and helping him through his feeding difficulties.

We do our best to balance caring for Baylor and our older son, Myles, who has autism. We decided to be open with Myles about Baylor’s condition, which has inspired Myles to learn everything he can about DNA and spread awareness by telling others about his brother’s diagnosis. While Myles also requires support, he has been a great help to us and even knows which medications Baylor needs. Baylor and Myles love to read  and listen to music together. Baylor especially loves music from Sesame Street and his preschool class music videos.  

Some of the hardest aspects of our day-to-day lives are the constant questions we get from others wondering what is wrong with Baylor, and the passing of holidays. While we are thankful for every year we get with Baylor, we never know which birthday will be his last — when the giggles, words, and crawling will stop. We try to soak up every bit of him to remember things like his ears and the way he smells. While MSD has affected Baylor in many ways, one thing it can never dampen or take away is our unconditional, everlasting, and powerful love for him. 

No parent should ever have to hear the word terminal. With your help, the United MSD Foundation can cure Multiple Sulfatase Deficiency, and give kids like Baylor the lives they deserve.

Follow Baylor’s MSD Battle on Facebook.