Engulfed in Generosity

The American Board of Pediatrics Helping Kids with Hemiplegia

 

Summer camp can be a life-changing experience.  It’s where you first learn to swim or shoot a bow and arrow or play music.  For Tracy Lambert’s son, Thomas, and dozens of young children just like him, it’s where they go to be strapped into a plaster cast every day and then try to have fun. 

The amazing thing is…they do!  In fact, there’s a list of children eagerly waiting to have this unique summertime experience.  And thanks to the American Board of Pediatrics, more of them have a chance to do just that.  

Thomas attends the Helping Kids with Hemiplegia Camp run by Holly Holland, a pediatric occupational therapist at UNC Hospitals.  The camp serves children ages 3 through 10 from across the state.  The therapy that puts Thomas in a cast is called Constraint-Induced Movement Therapy—CIMT.

Thomas was born with hemiplegia, a neurological condition caused by a stroke he had in utero.  Hemiplegia can be caused by other kinds of very early brain injury, but it is defined by its end result: motor, visual and neurological impairments that affect one side of the body.  In Thomas’ case, his motor control and nerve sensation on the right side of his body are weak.

“He was three years old when he first went to the camp,” remembers Lambert, whose son is now six. “They cast them on their good side.  So he wears a cast on his left side from nine in the morning until three in the afternoon during camp, which runs for ten straight days.  That forces him to use his weaker, right side. 

“From the very first moment, it was ‘Wow!’” Lambert recalls. “You could see the change.  You could SEE the difference!  It was really at camp where he began to realize ‘Oh my gosh! I can do things even using my helper hand!”

“I know it sounds like torture,” says Holland, who organizes and runs the camp in her spare time, “but it’s not.  Once you put the cast on, the kids just go about the business of doing the activities—like learning self-care skills—and playing the games that we have lined up for them, and they don’t worry about it.  Most of them don’t know what the weaker side of their body can do, at first.  But the fun activities motivate them to participate despite having their strong side casted.  And we have lots of staff who are assigned to each camper to guide and assist them when necessary.” 

As you would expect, another benefit of the camp is social—for the children and their parents, who also attend.  Most of the campers have never met other children who have the same developmental challenges, and their parents can feel equally alone in coping with the unique concerns of having a child with hemiplegia. 

“It’s a special experience for most of these kids to be somewhere where everyone is the same as they are,” says Holland. “As they get older, they begin to develop a real camaraderie.  They cheer for each other, and they’re competitive against each other.  Their parents tell me that all the kids talk about during the year is how they can’t wait to come back to camp.”

The camp also provides a set of events for parents while their children are involved in camp activities, including talks by guest speakers, conversations with physicians, and group discussions about issues that are important to them.  Parents are also expected to help run the camp for four hours.

Perhaps the biggest miracle of the camp is that the casts, the materials for activities, the camp facility, the daily snacks, the one-on-one professional attention from student therapists and the therapy plans that the children take home with them—even the t-shirts with the camp logo—have all been provided free of charge since the camp opened in 2005. 

“We started asking families for a $100 donation last year,” says Holland, “but that is strictly voluntary.  The majority of our costs have always been paid through grants and donations.  We run on a very small budget, considering what we do.  We use donated and recycled items for activity materials and virtually all of our staff are volunteers—mostly physical and occupational therapy students and a few professional therapists.  And families are offered discounts on the cost of lodging at the Stay Bridge Suites in Durham.” 

Still, the camp is a very expensive program to run.  Over the years Holland has received grants ranging from $2,000 to $5,000 to help defray costs.  Sometimes, during the school year, she and some of the OT/PT students work basketball games to earn $200 for the next summer’s camp. 

Then, late last fall, the camp’s funding picture suddenly changed. 

 “Each year the American Board of Pediatrics, where I work, selects a charity to support,” says Lambert.  “It has to be a child-oriented charity that is related to medicine, family life or education or that helps children who are at risk.  I decided to nominate the Helping Kids with Hemiplegia Camp.  A lot of people there didn’t know I had a son with hemiplegia, but when they found out I had this personal connection to the camp, they asked me to make a presentation about it.  I was really nervous, but I did the best I could.” 

The best was more than good enough.  The ABP decided to give a $25,000 donation to the camp for 2012. 

“They just engulfed us in this generosity!” exclaims Holland.  “That’s the only way I can say it.  It was unbelievable!  In the summer of 2011, some of their staff had donated all of our snacks, which was great and made my job a lot easier.  But this gift?  It might as well have been a million dollars, because to us it was that phenomenal.” 

Thanks to the Helping Kids with Hemiplegia Camp and generous supporters like the American Board of Pediatrics, children with hemiplegia have a priceless opportunity to work on their impairments in a fun-filled environment, developing the skills that allow them to be more easily mainstreamed when they’re back at school and that will help them grow up to become productive citizens. 

The life-changing things that happen when you attend this unique camp are ones that most of us take utterly for granted.    

“One little girl who had been to our camp went out to supper with her family a short time later,” recalls Holland. “Her parents told me that she picked up her corn on the cob with both hands for the first time and said, ‘Look! Righty can hold my corn!’”