Lillie has a very rare genetic condition called DDX3X Syndrome. DDX3X is a de novo mutation, which means that it was not inherited, it occurred during conception and is unlikely to occur again. DDX3X is a fairly new discovery and when Lillie was born they were unaware of this diagnosis. Her initial diagnosis was Spastic Quadriplegic Cerebral Palsy and although this wasn’t her correct diagnosis it opened many doors for funding her multitude of therapies, allowed her to receive funding for her wheelchair and funding through Variety for her two walkers that insurance didn’t cover. After subsequent rounds of genetic testing Lillie was officially diagnosed with DDX3X, a diagnosis that only 242 individuals in the world have and Lillie is 1 of 2 in the world to have her specific mutation.
Lillie is non-verbal and just recently began walking independently, only using her wheelchair for transportation purposes. She loves water and swimming pools and when her mom Hollie
, an employee at Numotion, heard about Morgan’s Wonderland and Inspiration Island Splash Park
at the Numotion National Leadership Conference she knew she had to take Lillie. In July of 2017, Hollie and her dad Mike took Lillie and her little brother Lucas to Morgan’s Wonderland. When they entered the park, Lillie was able to walk independently up the ramp to the slide of her choice without full supported assistance. “She truly played with other kids, not just side by side, but with them. She was able to choose for the first time where she wanted to go and she went! She even ran away from me for the first time when I tried to point her in the other direction. The moment you walked into the park you felt important and everyone was more focused on having fun instead of her medical needs.”
Lillie and Hollie work closely with Numotion’s Medical Supply team to get the products she needs. “The medical supply team at Numotion is great and is a true partner with us as we take care of Lillie’s medical needs. I never have to worry about not having the products Lillie needs because they reach out to me and take care of everything and then have it delivered right to my door” said Hollie.
Lillie’s Customer Care Coordinator, Melissa
, said “At Numotion, we have the unique opportunity to constantly improve the quality of life for our clients by providing them with medical supply products. We are the only national company that specializes in creating lifelong solutions for clients throughout their journey in rehab and life in their home environment.”