A community resource for pediatric stroke survivors and their families

Mom Creates Camp for Pediatric Stroke Survivors

By: Louise Rafkin

At only 5 months old, Audrey Vernick’s son Bennett, now 8, began suffering multiple seizures, sometimes more than a hundred a day.

A brain scan diagnosed him as a prenatal stroke survivor, likely having occurred in the second trimester of Vernick’s pregnancy. As early as 6 months, it was clear the left side of his body was weak and that his left arm was partially paralyzed. Vision problems soon surfaced.

Vernick, an author and former photojournalist, approached the challenge of having a special-needs son with a single question forefront in her mind: “How can I make Bennett’s life better?”

That question motivated Vernick, 44, to create a special summer camp for children who have suffered prenatal strokes. It’s a small group of children. According to the Children’s Hemiplegia and Stroke Association, prenatal stroke occurs in about 1 in 2,800 infants (in utero or younger than 1 month), and pediatric stroke occurs in 11 in 100,000 children from 1 to 18 years old. Because the numbers are so small, a support network and services can be hard to find. Vernick spent four years researching opportunities for her son before taking steps toward changing the equation.

Most prenatal and pediatric stroke survivors suffer weakness on one side of their body; many have other serious disabilities. When Bennett was 4 and 5, Vernick took him to a New Jersey-based summer camp where the main treatment was constraint-induced movement therapy. The idea is to restrain the child’s “good” arm in a cast, forcing the brain to make better use of the “bad” arm.

With the goals of developing motor skills and core strength, removable casts go on first thing in the morning. Combining orthopedic rehabilitation, social-skills building, physical activities, games, crafts, cooking and swimming keeps the kids moving and engaged through the frustration of being casted.

At the East Coast camp, parents and children arrived from as far away as Toronto and Saudi Arabia. Vernick saw positive changes in Bennett’s abilities, plus had the added joy of seeing him among his peers. But only a few such camps existed, none locally. The closest one at the time was in Seattle, which then was offered only to Washington residents. The distance to the East Coast made attending logistically difficult. It was after the birth of her second son that the resourceful Vernick decided to start a similar camp.

In the sunny dining room of the Eureka Valley home she and Bennett share with her second son, Sammy, 6, and her husband, Russ, a software programmer, Vernick said her decision to create a camp for kids like Bennett helped her avoid feeling “out of control.”

But founding a children’s summer camp, Vernick learned, was anything but a walk in the woods. In fact, it seemed like the opposite sentiment than the one she saw on the smiling young faces typically peering out of camp brochures.

In the months leading up to the 2010 launch of “Camp Bennett,” Vernick faced innumerable legal, logistical and financial problems; staffing quandaries; insurance and safety issues; and the stresses of dealing with parents. She dove into the marathon of organization – months of late nights, exhausting fundraising and countless phone calls. At one point, a licensing issue threatened to nix the whole plan. And while Vernick was juggling details for the second year of camp, Bennett underwent brain surgery. During the hard recovery, there was uncertainty on whether he would be able to attend.

The first year, a fundraising campaign on her personal blog and on Facebook raised more than $5,000, mainly among friends and family for the six campers. With a cost per camper of $3,500, she raised enough for two scholarships.

“I expected little,” said Vernick, who was overwhelmed by the support. After posting a wish list on her blog, a friend arrived with more than $200 worth of snacks, games and art supplies.

Occupational therapist Joanie Hooper came onboard, and volunteers signed on to cover one-on-one shifts with the six participants in the three-week program.

Families from all over California signed up. The first year of camp was held in a rented clinic; last year, with the group rising to nine, California Pacific Medical Center donated space at its stroke rehabilitation clinic. With the cost rising to $4,500 per child, grants and donations fully funded five of the nine campers, and three others were given partial scholarships.

Laurie Strawn, whose daughter Julia, 9, is also a prenatal stroke survivor, was one of Vernick’s early supporters.

“Audrey proved to us that if what you need for your kid doesn’t exist, it’s possible to create it,” she said, noting that the work it took to start Camp Bennett was beyond the scope of most people’s abilities – let alone the parent of two children, one with special needs.

“The best thing was that Julia was among a community of kids challenged in similar ways,” Strawn said. “They supported each other through the therapy with remarkable compassion.”

“As a parent, my job is to give Bennett stepping stones to a healthy life,” Vernick explained.

Vernick is taking a leave from organizing the camp this summer, but Hooper is planning a camp session in late July, possibly at Kidspace in San Francisco.

Despite her much-needed break, Vernick’s thoughts are still on a future for her son and his fellow campers. “I don’t care what the camp is called,” she said. “I just want this therapy available to kids that need it.”

Plus, the campers bonded and established friendships. “Being with the other kids helps them feel OK in the world,” Vernick said. “These kids are just not going to meet anyone at school or in their neighborhood like themselves.”

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Name: Audrey Vernick
Age: 44
Residence: San Francisco, Eureka Valley
Making a difference: Launched a therapeutic summer camp for children who suffered childhood strokes
In their own words: You want to do everything for your child whether or not they have special needs. If there is a need, it feels meaningful to know you can make it happen.

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http://www.baycitizen.org/blogs/change-agents/mom-creates-summer-camp-pediatric-1/

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