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Patient Stories
At two years of age, fraternal twins Alexis and Noah Beery had not met most of their developmental milestones and had such poor muscle tone they could barely walk or sit on their own. Noah drooled and vomited continually, and Alexis suffered from body tremors during which her eyes would roll back in her head for hours at a time.

An MRI scan had revealed damage in the periventricular area of Noah’s brain, which led to a diagnosis of cerebral palsy. But children with cerebral palsy tend to improve with treatment; in contrast, the twins’ conditions, particularly Alexis’s, worsened over time. When she was 5 years old, Alexis developed respiratory problems and continued to have protracted seizures. She also had extreme difficulty walking and was always off balance.
Alex turned 8 years old this summer and he continues to lose abilities. His parents continue their relentless search for answers and treatment for Alex.
Lilly Grossman was misdiagnosed with Cerebral Palsy as an infant. She was then misdiagnosed with Mitochondrial Disease. Lilly and her parents, Gay and Steve Grossman, found Lilly's true diagnosis and the reason for her physical challenges at age 15 after undergoing whole genome sequencing.
Their names are Harrison and Gracie Colegrove Their parents first started noticing that there was something wrong when they first started to walk. They would take a few steps and then fall down.

Concerned they searched for answers. This process took a long time and the children's condition deteriorated with time. Six years later both children were in wheelchairs and had lost almost all of their mobility, and still no answers.