Benefit held to help free a boy with cerebral palsy

Sage Williams cannot talk and cannot walk.

He has spent his six years in this world trapped in a body that doesn’t work and it will cost nearly $30,000 to undergo a procedure that could free him from cerebral palsy, his mother said.

A Woodbridge-based charity group that was inspired by Sage is working to raise the money for an umbilical cord blood stem cell transplant.

On Saturday afternoon, a small group of parents and their children gathered in the back of The Story Tellers children’s bookstore on Poplar Alley in Occoquan.

CP Kids Inc., which benefits children with cerebral palsy, partnered with the bookstore and Pottery Playground to paint ornaments that will be sold to raise money for the “Sage’s Flight for Freedom” project, said Ann Griffin, president of the nonprofit group that was started last year.

Teresa Williams lifted Sage from the floor, resting him on her hip.

“He’s got a lot of personality,” his mother said of her smiley son with those crystal blue eyes. “He doesn’t care so much for toys, he just loves people.”

The 29-year-old Burke mother gave him a kiss and carried him over to the tables where the other children were sitting to begin painting the glob-shaped ornaments.

Sage’s twin brother Rowan was also there to help. The two were born Aug. 13, 2002 — seven weeks early.

Rowan grew into a healthy child, but as an infant Sage showed multiple signs that something was wrong and at 10 months was diagnosed with the brain disorder.

The 11 children who attended the small event squeezed around two tot-sized tables and began swirling paint onto the ornaments with paint brushes, sponges and, of course, their fingers.

They painted with intense focus — mixing blues and greens, pinks and purples.

And the parents seemed to paint about just as much as their children did.

Woodbridge-resident Tequest Shifferaw, 34, a friend of Griffin’s, brought her daughter Lela, 3, and her son Nahom, 5.

“If this was a perfect world, we would never have this,” she said. “I really look forward to seeing him do well just like Rowan and I believe that this will happen.”

Griffin said the group is estimating that selling the ornaments on its Web site will raise about $1,000. The ornaments will be sold starting Nov. 1.

So far, the group has raised around $3,700 of its $25,700 goal amount.

The goal is to have all the funds raised by winter 2009 to fly Sage and his family to California, where the stem cells will be prepared, and then into Mexico for the transplant.

The treatment is not FDA approved — although the stem cells will be — and therefore is not available domestically and is not covered by medical insurance, the group says.

Stem cells have the potential to relieve his muscular spasticity, which is the main impediment to walking, according to the group.

There’s no way to know what the transplant will accomplish, but the hope is that Sage will be able to talk and won’t spend his life wheelchair-bound, Williams said.

Doctors have told her is that it won’t do anything to worsen his condition or harm him, she said.

“I try not to set my expectations to an unrealistic level,” she said. “I want him to be happy; I want to do everything for him now while he’s still young.”

“This is great,” she went on to say of the event. “I’m so used to doing everything on my own or on our own. It’s really great to have friends like [Griffin].”

Sage is CP Kids’ first project. Once they see it all the way through, they’ll move onto the next. And they’re always accepting applications for grants from the organization, Griffin said.

For more information on CP Kids, visit http://www.cpkidsinc.org.

Staff writer Elisa Glushefski can be reached at 703-878-8062.