Cover Story

A Shrine of Hope

Story by Audrey T. Hingley, Contributing Writer. Photos by Bill Sherrod, Editor.

 


Jennifer Wallace with her 10-year-old daughter Rachel and Shriner John O. Larson.

 “See how she’s smiling? She’s seeing her body do things that she can’t always get it to do. She’s smiling because she can do it,” says Jennifer Wallace, gesturing toward her 10-year-old daughter Rachel.

With bright, expressive eyes and long blonde hair that rings her face and spills down her back, Rachel happily participates in exercises to build her strength. A wide smile never seems to leave her face, even during intensive therapy at Richmond Hope Therapy Center in western Henrico County. Along with all her other therapies and treatments, twice a year Rachel participates in the center’s intensive therapy sessions (four hours a day, five days a week for three weeks) designed to help her gain strength, balance and improved daily function amid a diagnosis of cerebral palsy (CP).

Wallace, 32, who lives in Caroline County, admits she “bawled my eyes out” when Rachel was diagnosed with CP at age 10 months.

“When she was first diagnosed, I was told everything she wasn’t going to be able to do,” she recalls.

Cerebral palsy, a non-progressive disorder usually caused by damage to the motor control centers of the developing brain, is marked by muscular impairment and is often accompanied by poor coordination and speech difficulties. Although Rachel was started on various therapies shortly after the CP diagnosis, it wasn’t until Rachel was two years old that her mom met another mother of a CP child at a local mall who told her about Shriners Hospital. 

“I had seen the little clown cars [in parades], that was all I knew about Shriners,” Wallace says. “It wasn’t until I went to the Shriners Hospital that I finally felt hope. I stopped speaking about what she could not do, and now I think about all the things she can do.”    

nearly a century of care 

Shriners Hospital for Children, headquartered in Tampa, Fla., is a network of 22 nonprofit hospitals in the United States and Canada that date back to the 1920s. Originally formed to treat young polio patients, the hospitals are the charitable arm of Shriners International, a self-described fraternal organization. The hospitals treat children 18 and under for a wide range of pediatric orthopedic conditions, as well as cleft lip and palate conditions, burn care and spinal cord injuries.

In 2011 Shriners Hospitals began accepting insurance payments, although care is provided regardless of patients’ ability to pay. Hospitals are funded by gifts, donations, fund-raising efforts and endowment earnings. Transportation to and from Shriners Hospitals is also provided by the Shriners, with local chapters providing transportation (or reimbursing parents who drive themselves and their child), as well as covering meals, lodging and travel expenses.

John O. Larson, along with Jim McAllister, oversees Richmond’s Acca Temple Shriners’ transportation committee. “We have two vans and we have two drivers [per trip]. We’ve created a team of good, quality people [who are volunteer drivers],” Larson says. “My job is to coordinate with families and kids when they have appointments. We have kids going to 11 different hospitals around the country. In 2000 we had 70 kids; now we have 430 kids in our area we are helping. We spent $75,000 last year just on transportation.”

Larson, 70 and retired from the Richmond Police Department, says most children in the Central Virginia area go to hospitals in either Philadelphia or Green­ville, S.C., that handle primarily orthopedic and CP patients; about 20 children receive burn care at the Cincinnati hospital. Larson oversees transportation but also continues to be a volunteer driver and has driven Rachel and her mom many times to treatment.

“I’ve been to Philadelphia 79 times,” he notes. “In Greenville I have a hotel where we arranged a discounted price; we take care of the reservations and they direct-bill us. I spend about two to four hours a day working on hospital stuff.”

Larson, who has two grown children and grandchildren, admits, “I get excited to see these kids progress over the years and do things I never thought they’d be able to do. It gives you a totally new outlook on life.”

Children 18 and under are eligible for care if, in the opinion of Shriners Hospital physicians, they can benefit from the specialized services available. Applicants are accepted solely on the basis of the child’s medical needs. Families can apply directly and physicians make referrals as well.

Larson says, “We also do screening clinics. We have about 15 set up this year in different parts of the state. We have a doctor and nurse at the clinics to examine children and see if we can help; we don’t treat cancer patients, for example.”

He adds, “One of the biggest misconceptions most families have is when you let them know they won’t get billed an enormous amount of money. The second question people usually ask is, what kind of doctors do they have? Some people think they will get a second-rate quality of care, but Shriners Hospitals have some of the best doctors who specialize in their fields.”

“Everyone there is very polite and sweet,” Wallace says of her own experience. “They deal with hundreds of kids but when we get there, they recognize Rachel. There is always a situation worse than your own ... I see Rachel and all she struggles with, but all in all, she is blessed.”

Early on, Jennifer and Rachel went to Shriners Hospital in Philadelphia five or six times annually; now they go two or three times a year. In 2009 Rachel had spinal surgery at the St. Louis Shriners Hospital designed to permanently reduce some spasticity. Her mom says the surgery has made “a huge positive difference in her life.” 

She adds, “She is stronger on top than she is on the bottom, and better on the right than she is on her left. Cerebral palsy is brain damage, so every child with CP is different, depending on what part of the brain was damaged.”

Rachel particularly enjoys the warm-water therapy pool at the Philadelphia hospital; her mom says cold water makes Rachel hurt but the warm water pool is like going to a spa. Another treatment Rachel has in Philadelphia: Botox injections, which requires that she be placed under anesthesia when affected muscles are injected.

“Rachel has spasticity problems, which means her limbs are tight. After Botox, kids seem very weak because instead of using their spasticity to help them stand, they have to use their muscles,” Wallace explains. “When the spasticity is so tight, you can’t work the muscles, so she can actually work the muscles [after treatment].”

Rachel just finished third grade and via an IEP (individualized education program) for children with disabilities, has an aide at her public school who has been with her for five years. Although Rachel has some cognitive delay, Wallace notes, “She is very intelligent and understands everything that is said to her. She could have a conversation with you if it weren’t for the fact that the tongue is a muscle, which is also difficult to control, but if you know her you can figure out what she is saying.”  

Wallace is the mother of two other children (Riley, 7, and Matthew, 20 months) and has a supportive significant other, Sean Connolly. A happy child with a sunny disposition, Rachel likes dolls and loves crafts and playing with paper, which her mom says helps her fine motor skills. A small suitcase at home is filled with paper, scissors, glue sticks and colored markers that Rachel uses to create her paper crafts. In the summer months she enjoys riding a therapy bike outdoors that Wallace describes as “a huge tricycle with seat belt and footplates,” although rides must be supervised. On the weekend she likes helping her mom scramble the morning eggs, and although she needs help getting to the breakfast table, she independently feeds herself. Independence is an important word in Rachel’s world.

“Sometimes I try to help her and she will say no,” Wallace says. “There have been times I have tried to play with her and she will say, ‘Mommy leave!’ She’s very social, and she wants to be like the other kids.”

Being like the other kids is important to Wallace, who says her early sadness at Rachel’s diagnosis was primarily related to concerns over how her daughter would be treated by others.

“Growing up I watched people be cruel to people with disabilities. Kids who are different are easy to pick on,” she explains. “But the kids in our county have grown up with Rachel, they fight over who will push her wheelchair or help her with her walker.”

Wallace does admit that every day remains a struggle for Rachel, adding, “So many things I took for granted before I had Rachel I don’t take for granted anymore. But time has told everything about Rachel’s story, and every year she does something that surprises me.”

She believes “God put His hand out and put us in the right place at the right time” when she recalls her fortuitous mall meeting with the mom who first told her about Shriners Hospitals. “It all starts with a phone call,” she says. “Rachel would not be where she is today were it not for Shriners Hospitals.”

For more information:

Shriners Hospitals for Children

P.O. Box 31356, Tampa, Florida 33631

Telephone: 1-800-237-5055

Website: www.shrinershospitalsforchildren.org

 

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