By most accounts, Ellie Stinson, is a typical 3 1/2-year-old. She goes to preschool, plays with her brother, Nathan, 7; and loves dolls, Hotwheels, and Legos. Her mom, Courtney Stinson, says Ellie is witty, funny, super social, has a strong-willed streak and “just lights up a room” when she enters.
What isn’t so typical is that Ellie has a rare form of muscular dystrophy which requires care around the clock. She has a wheelchair, needs a ventilator and eats pureed foods via a gastrostomy tube.
Central to her normal, happy childhood is her “village” of caregivers and her parents, Courtney and Jeff Stinson, who are using experience and know-how in engineering and dietetics to help Ellie thrive while, hopefully, helping others along the way.
Giving back to children with special needs
“We’ve realized we’re most rewarded in life when we’re helping others,” Courtney Stinson explains. “It brings us so much joy to see Ellie thrive and be happy. Other people should have that too. We want to bring products and nutrition to others so they can also ‘savor life.’” The Stinsons are currently developing businesses for products and services catering to special needs under the names Savor Life Nutrition, Savor Life Adapted and Cooking for Tubies. They have several websites dedicated to telling Ellie’s story and providing information about their businesses.
Q & A with Courtney Stinson
What are you and your husband’s professional backgrounds? Jeff has a degree in physics and has worked as an engineer building medical positioning equipment for adults and pediatrics. I am a Registered Dietitian Nutritionist.
How have you used your training to help Ellie? Jeff is very inventive and great at solving problems to help Ellie do more and feel more normal in life. I’ve used my knowledge and interest in food and nutrition to make sure Ellie is fed the best way possible. Together, my husband and I have designed and developed many tools and devices for Ellie to experience more normal activities in life.
What products and services are you developing to help Ellie and others with their special needs?
I develop tube feeding recipes for others and host a private blenderized tube feeding group where I am able to answer questions and connect people to resources. Ellie has arm slings to help her lift her arms against gravity to do things like play with toys or color. We also designed a bag that greatly improves safety and speeds up the process of going out of the house with Ellie. The bag holds her suction machine and other essential equipment, replacing 3-4 bags that were usually needed. This means fewer bags to accidentally forget as we leave the house.
Advice for the family of a special needs child? Celebrate all the little milestones. Focus on the good.
What experiences have you been able to give Ellie through resourcefulness? Playing in a foam pit at an indoor play place, going on bike rides with an adapted bike trailer, swimming, playing kitchen in an adapted harness.
What are your special hopes for the year ahead for your family?
A cure for muscular dystrophy and an insurance system that allows families to get the services and devices they need instead of trying to tell us what we need. For example, it took an entire year for Ellie to get her power chair because of insurance denials. She was also denied important wheelchair accessories like a parent stop switch or a tray so she can play while in her power chair.
Also, I could use more time! Can someone please invent the time machine so days can have more hours in them, please?
On Ellie’s village
Stinson says she is thankful for her support system of family and caregivers who have surrounded their family with love. She is candid about the struggles saying “life isn’t sunshine and butterflies all the time. Every day is hard.” But, she says it is important to realize that everyone has struggles. “We should all lift each other up and help each other. We believe it’s important to help others and allow help when you need it.”
For more information about Ellie and
the Stinson’s businesses for special needs go to
Courtney’s Stinson’s hub at courtneystinson.com.