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Make-A-Wish gift transforms girl's life [updated]

Newport Beach 6-year-old receives mobile stander to help with her motor skills that are impaired by her Rett syndrome.

May 07, 2012|By Sarah Peters
  • Annie and her daughter, Mikyla Smith, of Newport Beach. Mikyla was diagnosed with Rett syndrome when she was less than 2 years ago, but, thanks to the Make-A-Wish Foundation, she is the recipient of a device that helps with her fine motor skills that are impaired because of the syndrome.
Annie and her daughter, Mikyla Smith, of Newport Beach.… (Photo by Melodee…)

The thing that Robert Smith wanted most was furthest from his reach: the gift of enabling his youngest daughter to run and play with other children in their Newport Beach neighborhood.

When she was less than 2 years old, Mikyla, now 6, was diagnosed with Rett syndrome, a rare neurological disorder that makes speech, walking and other fine motor skills difficult or impossible.

"To see my daughter watch our older daughter play soccer, you just have no idea," Smith said. "They call girls with Rett syndrome 'silent angels' because they speak with their eyes. Mikyla is really good at that, and I could see that sadness in her eyes that she couldn't get up and run around."

Accumulating medical and care costs put chances of getting a high-tech mobile stander — an electric device that gives greater range of motion than a traditional wheelchair — out of the family's reach.

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Then in February, the family's wish was realized: Mikyla received a mobile stander, thanks to the Orange County/Inland Empire chapter of the Make-A-Wish Foundation.

The gift has transformed Mikyla's life.

"It's the small things that make a difference in a child's and a parent's life that last longer than just receiving the gift," Smith said. "It's the smiles on her face when we're running down the sidewalk, and the wind is in her hair, just like a normal kid."

Mikyla's story will be highlighted at the 17th annual We Care for Kids golf tournament benefiting local children, which returns to the Mesa Verde Country Club in Costa Mesa on May 14.

The event is organized by Newport Beach-based Tax & Financial Group and partners with the Make-A-Wish county chapter. It aims to raise $100,000 to go toward granting wishes for other children.

With an average price tag of about $5,000 per wish, the funds raised could potentially help 20 other deserving children in Orange County and the Inland Empire, said chapter spokeswoman Colleen Donovan.

"This event is something we rely on," she said. "We couldn't do what we do without the community coming together and the support from businesses like Tax & Financial."

The event is one of the chapter's largest fundraisers of the year and is key to securing its year-end goal of granting wishes to 325 children, Donovan said.

Ultimately, the chapter wants to raise enough funds to each year help an estimated 800 local children, who meet the requirements of being between 2 1/2 and 18 years old and have a life-threatening medical condition.

"It's going to take time — it's a whole process," Donovan said. "But with more money, more funds, we can help more children. That means more staff and more volunteers."

Tickets to the event are sold out, but information on how to donate or volunteer can be found at the chapter's website at wishocie.org. More information on Mikyla and Rett syndrome research can be found at http://www.mikyla-cure.org.

UPDATE: While registration for the tournament is full, dinner tickets can be purchased for $100 per person by contacting Daphne Berry at daphne.berry@tfgroup.com or calling 949-223-8100.

sarah.peters@latimes.com

Twitter: @speters01

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