Shining Star answer to her daughter's question

When Red Rock Elementary Assistant Principal Linda Achondo sent an item about the Shining Star Pageant, that was the first time I'd heard of anything like it.

The woman who put the pageant together is Rene Martinez of Prosser, but the real mover was her special-needs daughter Sofia, 13 and in seventh grade.

After searching for such a pageant, Rene and Sofia found there were some but not in Washington. Sofia asked why they couldn't organize one themselves.

Rene will do anything for Sofia. That's how she copes with a broken heart. She may have Sofia for only 5-10 more years.

Sofia was diagnosed with Batten disease, which is fatal, in 2011. According to Rene, Batten causes blindness, seizures, dementia and other complications, and Sofia already has those three. Life expectancy for Batten disease victims is 18-23 years.

Sofia has no center vision but does have some peripheral sight. Her vision went from 20/60, or just needing glasses, to 20/100, which is legally blind, in 30 days.

That was March 2011. On June 3, 2011, Sofia was diagnosed with Batten disease. In June 2012 she started having seizures.

The challenges are sometimes overwhelming for Rene, dealing with complicated insurance issues and medical travel to the Portland Children's Hospital to see Sofia's specialists. The worst is the sense of loss she feels daily.

"But Sofia has such a bright spirit and positive attitude, it's hard for me to stay sad very long," Rene said. "She is kind, creative, funny."

"Sofia doesn't know her future," Rene added. "I just want her to enjoy life. So for the three of us - Sofia has a younger sister Isabella - we savor every moment and make the time we have count."

Rene has dedicated herself to the best quality of life she can provide. One result is Shining Star.

"Sofia had the ideas, and I was her work horse," Rene said. "She made most of the decisions. She was always talking up the event and inviting people to participate. While at an event for blind athletes, she met a friend from Yakima and talked her into joining the pageant."

Rene was overwhelmed by the support she found in Prosser. The school district got on board, and businesses donated items and services. Rene printed only 125 programs, and pageant drew a full house of more 300 people. Sixteen girls answered the call to the first Shining Star Pageant.

"Parents and participants were so excited," Rene said. "I am sure they were nervous too, at first, because sometimes saying the word pageant can have negative connotations."

The pageant had lots of "buddies" backstage to help the girls change and put on make-up. They spoiled the girls. Each one got a tiara, a gift bag, a pageant t-shirt, a framed certificate of participation and a trophy.

The competition was low-keyed. The difference between the queen in each division and all the princesses was flowers and a sash.

Rene did not cry at the pageant. She didn't have time. But others did, and it was suggested she hand out complimentary tissues next year.

"I was just so happy to see the joy and excitement on these girls' faces," she said.

A woman in Canada has contacted Rene about beginning a similar event. It won't be long before Rene realizes she has started something that could grow beyond belief.

"It's all for the girls," she said. "I hope the idea continues in other communities. If parents want to create other opportunities for these girls, I encourage them to do so."