Biking up the ‘big hill’

ThereseAnn Siegle turned 50 last week, and her daughter will turn 10 in the coming days. They’re hoping to celebrate their birthdays by raising $30,000 –- although it’s not for either of them.

Siegle’s daughter, Natalia, suffers from Trisomy 13, a rare chromosomal disorder that results in physical and intellectual impairment. Each day between their birthdays, Siegle and Natalia plan to ride along the Orange County coast on a tandem bike –- the mother in the back seat pedaling and steering, the daughter in the front resting, pedaling when she feels like it and operating a squeak toy that doubles as a horn.

Natalia, who Siegle said has the mind of a 1 1/2-year-old child, needs help walking and can sign a few words and say “Mama.” She’s been a neverending source of joy to Siegle, who noted that many mothers are encouraged to terminate pregnancies when their fetuses are diagnosed with Trisomy 13.

“Basically, we’re just loving every moment,” the Huntington Beach resident and mother of four said.

During her two weeks of daily rides, Siegle hopes to encourage 3,000 families to donate $10 or more each to pay for five more tandem bikes. The bikes will go to five other families across the nation whose children suffer from Trisomy 13.

Last year, the Siegles received their own tandem bike from an unexpected benefactor. Michael Hennessey, a triathlete who lives in Texas and runs the nonprofit Ironman for Kids, learned that an acquaintance had a son who had recently died of Trisomy 18, a disorder similar to Natalia’s. He went home to do Internet research on Trisomy, and Siegle’s website, www.livingwithtrisomy13.org, was the first to come up.

In January 2009, Hennessey held a fundraiser called Spin for Joy, in which participants rode exercise bikes for an hour, to purchase a bike for Natalia. Since then, Hennessey’s group has bought three more bikes for families of children with Trisomy.

Raising awareness of the disorder is difficult, Hennessey said, because Trisomy is such a little-known condition. He noted that his wife has worked with special-needs children for 20 years and never dealt with a Trisomy case.

“It’s a big hill we’re trying to climb to fight for these kids,” Hennessey said.

Siegle launched an earlier website to write about the journey her family was taking with Natalia, but soon, other women began contacting her and saying they had terminated their pregnancies because they didn’t know Trisomy children could be carried to term. Siegle was then inspired to start her new website, which features stories of other families raising children with the disorder.

“We call them miracles in progress,” Siegle said. “These are miracles in progress.”

How to Help

To donate to Siegle’s cause, visit www.active.com/donate/spintojoy.