Making the Most of Every Milestone: Myles’ Story
Diagnosis: SLC35B2 Deficiency with Hypomyelinating Leukodystrophy | Numotion Customer Since: 2023
Four-year-old Myles of Huntersville, North Carolina brings joy and determination to everything he does. Living with SLC35B2 deficiency with hypomylenating leukodystrophy, an ultra-rare genetic diagnosis shared by only one other child in the United States, Myles approaches each day with curiosity, strength, and a love for play. He especially enjoys being outside, working hard in all his therapies, spending time with his sisters, and anything involving balloons.
Myles first became a Numotion customer when he was two, and his family describes their experience with the company as overwhelmingly positive.
“Our experience with Numotion has been incredible. Everyone is so kind and responsive,”
Myles’ Mom
That support has been consistent as Myles has grown and as his equipment needs have evolved.
The process of obtaining equipment has been smooth and collaborative. His family works closely with their physical therapist, Mckenzie, from Milestone. “Then, James from Numotion comes out with a demo or just to measure and fit, then James comes back out when the equipment is ready,” they explained. This hands-on guidance has helped ensure that each piece of equipment meets Myles’ needs and supports his continued progress.
Every device Myles uses plays an important role in his daily independence. His stander helps him work on strength and allows him to play in a more upright position. His wheelchair is something he relies on throughout the day. It helps him get around, and the tray provides a stable surface he uses as an activity chair during playtime and therapy sessions. His bath seat, Splashy, is essential for helping him sit safely in the tub. He also uses the Upsee with his mom and dad during therapy sessions, which helps simulate walking and gives him opportunities to join in inclusive activities like exploring the park or participating in holiday activities like Easter egg hunts.
Myles’ equipment has remained dependable from the start. His family shared that they have “never needed to” request service or repair because “everything’s been great after final fittings.”
That reliability has allowed them to focus fully on Myles’ growth, comfort, and participation in his favorite activities.
Myles’ world is full of connection and possibility, and his equipment gives him more ways to explore it each day. Surrounded by a dedicated support system and a family that celebrates every milestone, Myles continues to make meaningful progress while doing what he loves most: learning, playing, and working hard through every adventure.
