Parents of children with spina bifida reach out

Contributed photo Hendrix Huck, 3, of Marietta, smiles from his wheelchair. Hendrix has spina bifida, a condition caused by a malformation of the spinal cord. His parents are hosting a public information session about spina bifida Saturday afternoon in Williamstown.

Like every child, Hendrix Huck changed the lives of his parents and siblings. The ways in which he changed things are out of the ordinary, however.

Hendrix was born with spina bifida, a spinal malformation that affects movement and sensation. He is now 3 years old and moves around in a wheelchair.

“Hendrix doesn’t have any feeling below his knees, so he uses a wheelchair,” said his mother, Jessica Huck.

Jessica Huck was instrumental in establishing the Mid-Ohio Valley Spina Bifida Fund, a nonprofit that raises money to assist families affected by spina bifida who live in the valley. The fund holds events during the year, and one is coming up Saturday: an awareness session from 4 to 6 p.m. at the First Presbyterian Church in Williamstown.

Children who have spina bifida are born with an incomplete closure, or lesion, of the spinal formation, which affects their ability to move and to feel sensations. There is a range of severity, with some children having slightly afflicted motor skills and others with profound levels of paralysis. Nearly all have trouble with bowel and bladder functions.

Jessica Huck said she became involved with the spina bifida fund in part because of her own experience.

“Part of our mission statement is educating people,” she said. “When I found out, when I was pregnant with our son, I knew nothing about it. October is Spina Bifida Awareness Month, so we’re doing a workshop about what it is, what it’s like for the families and other kids.”

Jessica, a medical lab technician, gave up her career to stay home and care for Hendrix.

Hendrix’s day starts with his mom getting him out of bed

“He has to wait for somebody to come and get him, he can’t get up by himself,” Jessica said. “We have to get his two older sisters to school, so I carry him to the car and get him into the car seat.”

After his bath and cleansing routine, Hendrix likes to watch “Mickey Mouse House” from the sofa while eating his breakfast. He has daily physical therapy, either at a Memorial Health System clinic or at home.

“We’ll get on the floor and play, he follows me around in his wheelchair, I teach him chores, work on his alphabet,” she said. Hendrix will never walk independently, she said, but part of his routine is learning to stand, in part to prevent pressure sores and other injuries from constantly sitting.

“Mentally, he’s very smart, nothing wrong there, his only problem is that he can’t walk,” she said.

The family lives in Williamstown, and Hendrix will start preschool next year, one reason Jessica hopes the new Williamstown Elementary School, now under construction, will be finished by then.

The old school is simply not practical for wheelchairs, she said.

“It’s difficult when the girls have something going on like a school fair, I can’t take him, there’s no elevator and we can’t get him up all those stairs,” she said.

Jessica said there are about seven other families who have either children or adults with spina bifida in the area covered by the foundation, which includes Washington County and Wood County, W.Va. Abby Zimmer in Vincent is a member of one of those families. Her 7-year-old daughter Graycen was born with spina bifida and goes to Waterford Elementary School.

Graycen, she said, can walk with the aid of AFOs – ankle and foot orthotics, or braces – although she uses a wheelchair as a fallback aid when she tires.

“She has a wheelchair for long distances. She sort of crouches at her knees, and that puts a lot of pressure on her other limbs,” Zimmer said. “When she gets home, she likes to take her braces off and relax for a while.”

Waterford Elementary is a modern building, and that’s one of the reasons the family chose that school, she said.

“It’s fully accessible, even with a wheelchair, it’s equipped with an elevator. And beyond that, the school district has just been amazing for her,” Zimmer said. “She has a full-time nurse, she has an IEP (individual education program) because she has some cognitive delays. The teachers, the aides, everybody is amazing.”

The Zimmers have two younger children, Asher, who is 4, and Alayna, who is 9 months.

“Graycen is a great big sister, she loves her baby brother and sister, they are all very close,” she said. “Asher is very attentive to her, almost like a big brother, he holds doors open for her because he knows it’s hard for her, he helps her carry her stuff.”

Both women said the most alarming part of the process was the diagnosis before birth and the unknowns in the future.

“We are passionate about letting people know what it’s like,” Zimmer said. “When I was pregnant, we found out at 20 weeks. We were in Columbus, the doctors brought up the possibility of abortion, but that was never even a thought for us. We were just scared to death, not knowing what to expect.”

Huck said she wants to reach out to anyone who’s facing the same situation, as well as anyone who’s just interested in spina bifida in general.

“We struggled financially, emotionally, and there are other people out there just like us. We want them to know they’re not alone,” she said.

Spina bifida affects between 1,500 and 2,000 births per year in the U.S., according to the National Institute of Health, and about 166,000 people in the country have the disorder.

Such children are a life-changing experience for families, in ways beyond expectation.

“Hendrix is the biggest blessing, he has taught us a lot,” Huck said. “It changes your attitudes, how you feel about people.”

“Graycen has complications, but she has a happy life. She’s got friends at school, she’s done cheering and horseback riding, she’s enjoying life, nothing’s holding her back,” Zimmer said. “I can’t imagine life without her.”

More information is available at movsbf.org.

Michael Kelly can be contacted at mkelly@mariettatimes.com.

If you go:

• What: Spina bifida information session.

• When: 4 to 6 p.m. Saturday.

• Where: First Presbyterian Church, 314 W. Fifth St., Williamstown.

• For information: Jessica Huck, 740-434-8571.