KANSAS CITY, MO (KCTV) -- A local girl is living with such a rare disorder that the diagnosis even left doctors surprised.
We all have about 20,000 genes in our bodies. One of those genes is called GNAO1, or G Protein Subunit Alpha O1.
For 3-year-old Mira Crump, it was a simple “misspelling” of just one of these letters or numbers in that gene that has totally changed her life.
Right now, there are only 100 cases of this worldwide.
Mira can light up a room like no one else. James and Nicole Crump are Mira’s mom and dad.
It’s the certainty of having those moments each day at Ability KC that balance out the other very uncertain parts of Mira’s life.
In 2016 at just three-and-a-half months, Mira became the 36th GNA01 mutation diagnosis worldwide.
The gene mutation severely prohibits Mira’s motor functions. The devastating diagnosis left the first-time parents uncertain of what to do next -- until they ended up at Ability KC.
Unlike her motor skills, Mira’s social skills and brain development are more than fine.
Ability KC is the only therapeutic daycare of its kind in the region. Onsite therapists work with kids with disabilities daily. They integrate them into classroom settings with typical children – and children like Mira – side-by-side.
Occupational therapist Mel Montague and physical therapist Shanna Kotschwar spend three hours with Mira each day swinging, bouncing and walking.
The therapists help Mira take steps using this special device. And although she can’t talk, she has an adaptive chair with a red button – she can push to say hi.
Although much of Mira’s future is uncertain, her parents say one thing is for certain: everybody here loves her. And, that’s been their saving grace.
In total, Ability KC helps more than 3,000 kids, adults and families living with disabilities.
Right now, Ability KC and Mira’s parents are working on getting her a new piece of technology that will allow her choose more words and eventually form full sentences, using that recorded talking device.
If you'd like to donate to Ability KC, click here.