Giving life to his daughter

When 21-month-old Mikyla Smith wants to rise out of bed in the morning, she has to have assistance to walk. On most days she travels with her mom to therapy in Rancho Santa Margarita or Fountain Valley, but occasionally stays at home when therapists come to visit her.

Her condition will begin to inhibit much of her motor function and she may never fully speak, but she still giggles and smiles — and when her father looks at her, he smiles, too.

“It is hard to look into your daughter’s eyes and say ‘I didn’t do anything for you today,’” said Robert Smith, Mikyla’s father and a Corona del Mar resident. “I have to be able to look into my daughter’s eyes at night and say I am doing everything I can.”

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.”

Smith’s goal for Parsons’ trip is to raise $500,000. Parsons will speak at local bike shops and chambers of commerce at the many cities he will transverse.

Smith acknowledges it is an optimistic goal, but achievable. In the long term, Smith seeks to have the organization produce millions of dollars a year to fund Rett Syndrome research.

“[The charity] started out of frustration that a lot of parents get when you are hit with this type of disease, that [doctors] just want to treat the symptoms,” Smith said. “It brings tears to my eyes to find someone who wants to do it for unselfish reasons.”

Parsons, 35, had been mulling the bike ride for about six months and approached Smith about doing it for Mikyla a month ago.

From there the two have worked to build a website and start the foundation that will donate all of its proceeds to scientists working for a cure.

“She can’t help herself and didn’t put herself in a bad situation, and I just want to help her,” Parsons said. “The decision to go ride my bike was easy, and I wanted it to be more than fulfilling a selfish goal.”

Visit www.mikyla-cure.org to learn about donating to help find a cure for Rett Syndrome.

All donations will be given to scientist Adrian Bird to continue his research as well as toward another project that could test thousands of drug compounds to search for a cure.

For more information on Rett Syndrome, go to www.rettsyndrome.org or watch a video about Adrian Bird’s research at www.youtube.com/watch ?v=RyAvKGmAElQ.

DANIEL TEDFORD may be reached at (714) 966-4632 or at [email protected].