Special girl gets special gift

GAS — Heidi Hibbs is shy and forthright, funny and persnickety — much like any other six-year-old. But Hibbs has cerebral palsy, along with other medical conditions, that left her unable to walk until the age of four, said her grandmother, Elizabeth Hibbs, who along with her husband Tony is raising Heidi.

The Hibbses take Heidi to Kansas City every three months for Botox injections that help her muscles function better, Elizabeth Hibbs said. With other appointments, the Hibbses “are up there five to nine times a year,” Elizabeth Hibbs said.

A year ago, Heidi had a shunt in her brain replaced. A long tube drains fluid to Heidi’s stomach, Hibbs said. And Heidi still receives regular physical therapy through the ANW Cooperative.

That Heidi can do so much is nothing short of a miracle, her grandmother noted.

Born at just 25 weeks along, weighing only 1 pound 8 ounces, Heidi “was immediately Life Flighted from Allen County Hospital to one in Wichita,” where doctors told the family that Heidi “would never walk or talk,” Hibbs said. “She was so little you could see through her,” Hibbs said.

Heidi is the daughter of Hibbs’ son Jonathan and his girlfriend Sarah Swogger. At the time of her birth, the couple, in their early 20s, were caring for a one-year-old son. 

“The stress was too much” for them, Hibbs said. So when Heidi was 14 months old, she went to live with her grandparents, who have cared for her since. 

“That first year we had her, we had 95 out-of-town doctor appointments” Hibbs said.

Common to all individuals with cerebral palsy is difficulty controlling and coordinating muscles, according to the website emedicine. 

Heidi wears a foot brace and her right hand is almost always coiled into a fist, Hibbs said. She has a brace for that, too, to stretch her fingers, Hibbs said. She also has osteogenesis imperfecta — fragile bones, Hibbs said, and is completely blind in her left eye.

The combination meant Heidi has had difficulty not only learning to walk, but other activities other children her age have already mastered, such as going up and down stairs and riding a trike.

Enter Vickie Snavely of ANW, and AMBUCS, a North Carolina-based national service organization that assists individuals with mobility impairments.

Hibbs learned of AMBUCS during a visit to her brother’s in Dodge City about a year and a half ago, she said. At a mall-based health expo, AMBUCS representatives had forms that put Heidi on a wish list for an AmTryke, a specialized tricycle designed with weighted pedals, odd-shaped handle bars and other modifications that allow those who cannot ride normal bikes to use the vehicles.

The agency required verification of Heidi’s needs, which is where Snavely came in, Hibbs said, crediting the therapist with filling out necessary forms that resulted in Heidi’s receiving an AmTryke this Christmas.

“Last Wednesday we got ready to go to school and this big ol’ box was outside” the family’s door, Hibbs said. “I brought it in the house and put it under the tree. On it was a big red sticker that said, ‘For Heidi.’”

“It was my trike,” Heidi knew.

Snavely had received a call from AMBUCS a few days earlier, letting her know the trike was on its way.

“It was odd,” Hibbs said. She hadn’t heard from the organization between the initial flurry of submitting materials and receiving notice the trike was coming.

But she is grateful.

“This will help with her mobility and bein able to be with her peers,” Hibbs said of Heidi, a first grader at Iola’s McKinley Elementary School. “It will be huge for her.”

12/30/10