Family takes steps against cerebral palsy
Despaired upon diagnosis, mother calls daughter a success story
Friday, September 10, 2010
If you go
• What: Walk, Roll ‘n’ Run for UCP.
• When: Saturday, 8 a.m. registration; 9 a.m. run; 10:30 a.m. walk and roll.
• Where: Southeast Main and Southeast Water Avenue, Portland.
• Cost: Run: $15. Walk and roll: $25 for adults, youth free.
• Information: 503-777-4166 or http://www.walkro...>
Nicole Riggs of Vancouver was devastated when doctors diagnosed her 4-month-old daughter, Fiona Richey, with cerebral palsy in 2001. At the time, the 18-year-old mother didn’t know about the condition, which affects body movement and muscle function. Fast-forward to today and Riggs will tell you something completely different.
Fiona’s story isn’t a sad one — it’s a success story, Riggs said on a recent weekday afternoon. Fiona, now 9, had just returned from school and was enjoying her special swing in the backyard of the Riggs’ East Vancouver home.
“She’s very happy, very healthy and improving all the time,” Riggs said. Although Fiona typically sits in a wheelchair, she enjoys swimming when she gets the chance and even gets in a 30-minute horseback ride on most Saturdays.
Tomorrow, Fiona will skip the equine event to participate in a 2.5-mile walk along the Portland waterfront to help raise awareness and funds for cerebral palsy.
The Walk, Roll ‘n Run for UCP takes place at 9 a.m. in Portland. It includes an 8-kilometer run and a 2.5-mile walk. Proceeds from the event will benefit United Cerebral Palsy of Oregon and Southwest Washington programs that help local families, including Fiona’s.
This will be the fourth year the Riggs family will participate in the walk. Family members walk to support UCP programs that have helped them along the way and, perhaps more importantly, raise community awareness of cerebral palsy.
Doug Taylor, spokesman for UCP, says cerebral palsy is caused by a lack of oxygen in the brain and results in a disconnect between muscle functions and the brain. Many times it is caused through a traumatic birth experience or crowding in the womb, he said.
Not many people are familiar with the condition because it can have extremely varied effects and look different in each case, Taylor said. Some people are literally “trapped in their bodies,” some have subtle issues and others are somewhere in the middle.
Fiona and Nicole sometimes run into people that aren’t familiar with CP. It’s OK so long as people ask about her daughter’s condition instead of offering condolences, Nicole said.
“I don’t mind questions” that mean people are trying to understand, she said.
Understanding is something Nicole shares with her husband Brett — Fiona’s stepfather. The two met through the UCP’s family support program (Brett’s cousin’s daughter also has cerebral palsy). They now have two other daughters: Eileen, 2; and Claire, 6 months.
They are grateful for the program, which provides support groups, special events and the occasional certified baby sitter to give parents a night off.
Supporting families is important because having a child with a disability takes a toll on the parents’ social lives, UCP spokesman Taylor said.
Nicole, Fiona and family have come a long way since diagnosis.
Fiona is in a special fourth-grade class at Hearthwood Elementary School, where she has personalized physical therapy and specific academic goals to reach. When she started horseback riding, she needed a special saddle and seat belt for support. Now she uses a regular saddle and is able to support herself for the 30-minute ride.
Nicole once was a scared mother. Now she’s an advocate.
“It can be easy for people with disabilities to feel isolated,” she said. “The more people know about CP, the more accepting of it,” the better.
She’s walking “not only for Fiona and to support the family program,” she’s walking for kids with CP, she said.
“These kids are wonderful, like anybody else.”