Mikyla was diagnosed in January with Rett Syndrome, a neurodevelopmental disorder that is often first seen in infancy or early childhood and is part of the autism spectrum.
It is a rare condition that almost exclusively affects girls, shuts down communication skills, severely limits hand use, harms breathing patterns and can even cause seizures.
Most women live into adult life, but need full assistance to complete everyday activities.
But last year, a study out of Scotland by Adrian Bird demonstrated the ability for certain drug compounds to reverse the effect of Rett Syndrome in mice. Wired magazine called the study one of the top 10 breakthroughs in science for the year.
But more tests need to be done and Smith wants to make sure they happen.
Smith, a 37-year-old bicyclist, is teaming with a friend, Scott Parsons, to raise awareness and money for a new charity Smith has started called Mikyla Cure.
Parsons, a bicyclist as well, will be riding across country in Mikyla’s name beginning Thursday at Golden Gate Bridge. A lifelong dream of his, Parsons has changed his motivation for riding into a charitable quest for Mikyla and Rett Syndrome, going as far as quitting his job as the regional sales vice president for Georgia Pacific, giving up his home in Corona del Mar and traveling about 5,000 miles to raise money and awareness.
“It is pretty easy to have a good life, but most people don’t take the risk to have a truly great life,” Parsons said. “When I met Mikyla, everything just fell into place. It is really that simple.”
