About Us

Blair (often referred to as “Blair Bear”) lights up every room she enters and can change the course of any bad day with her brilliant smile. Blair loves to explore nature and she is an extremely affectionate child who loves stuffed animals, particularly her lifelong best friend “panda bear”. Blair is extremely empathetic and a relentless hard worker, serving as a role model to all she encounters who can clearly see the challenges she herself faces in daily life. Even at 6 years old, and despite hours of therapy each day and weeks of intensive therapy each year, Blair has never been able to walk independently without support and her wheelchair providers her main source of mobility.

Lilly is a determined, opinionated and kind little girl. She has never met someone or something she doesn't want to "help" and she loves dancing and singing, her stuffed animals, baking, and her brother, cousins and friends. At just 5 years old, she is mature beyond her years and endures interventions, medications and endless therapies with a resilience far beyond her age. Lilly primarily crawls around the home, uses a walker at school and relies on her wheelchair more and more for longer distances. She navigates life with a smile on her face and an endless curiosity about the world around her, even when she has to rely on someone else to help her experience the life most of us live without second thought.

Max is a happy and silly 3-year-old boy who has shown global developmental delays since birth. He was officially diagnosed with de novo SPG4 at age 2.5. He has worked hard strengthening his muscles in physical therapy since he was 4 months old and hopes to gain enough strength to walk on his own one day. Max is learning to use his wheelchair outside of the home, and refuses to let his disability get in the way of playing with others. Max loves to play with cars and trucks, read books, and scare his friends by pretending he’s a dinosaur. He has a huge smile and gives tight hugs and sweet kisses to his friends and family.

By 10 months of age, Sam’s parents noticed developmental delays. After consultations with neurologists and extensive tested, he was initially believed to have cerebral palsy. In 2021, genetic testing confirmed de novo SPG4. Sam, now 12, experiences increasing leg spasticity and low muscle tone, as well as impacts to his speech. He has received various treatments, including a baclofen pump. Despite being mostly wheelchair-bound, Sam enjoys therapy, video games, fishing, and spending time with his friends and family. He remains a happy, compassionate, and determined boy who smiles through both good and challenging times.