By AMERICAN HEART ASSOCIATION NEWS

JoeyJoshuaMartin

Joey and Joshua Martin. Photo courtesy of James Ostrand.

Joshua Martin had to be pushed in a stroller and needed an oxygen tank when he came to America to join his adoptive family. But now the 12-year-old can run through activities at Camp Boggy Creek with the rest of the campers who, like him, suffer from serious illness.

The 232-acre camp outside Orlando is celebrating its 20th anniversary. And the American Heart Association’s American Heart Heroes program in Florida has been there the whole way, providing tuition that has enabled more than 1,000 children with congenital heart disease to attend the camp.

Doctors and nurses in a variety of pediatric specialties volunteer to provide round-the-clock care to ensure the campers can get their medicine and continue their protocols. But the goal is to allow these special kids, ages 7 to 16, to have a summer camp experience like their classmates at school.

“It’s a chance for them to just get out there and have fun. The focus is on just making them feel just as normal as they can be and allowing them to do activities and not focusing on their medical care,” said Dr. Gary Stapleton, division chief of pediatric cardiology at the Johns Hopkins All Children’s Heart Institute in St. Petersburg, Florida.

For the past three years, Johns Hopkins All Children’s Hospital and American Heart Heroes have co-hosted a send-off for “heart week” campers at the St. Petersburg hospital. The campers returned home June 14 from six days away from their parents. They got to go swimming or fishing, ride horses, try archery or, if they were old enough, climb a 42-foot high ropes tower.

The theme for the 20th anniversary is The Joy of Yes, said June Clark, the camp’s president and chief executive officer.

“The children hear ‘no’ so much during the year,” she explained. “We wanted to celebrate the fact that these kids get to come to camp, and  it’s about empowering them and allowing them to do things that they didn’t think were possible, and they get to hear ‘yes’ as opposed to ‘no.’”

Sonia Martin, the mother of seven boys, said Joshua especially likes taking part in the messy Olympics, dubbed “Silly O’s,” which includes contests with an assortment of items like ketchup and chocolate sauce.

Adopted from China along with two other boys four years ago by the Martins, Joshua had a complex heart condition; tetralogy of fallot with pulmonary atresia. Among other things, Joshua was born without a pulmonary valve and was breathing through a hole in his heart that was supposed to close shortly after birth.  Chinese doctors deemed him inoperable and said his condition was terminal, Mrs. Martin said. Joshua’s oxygen level was around 41 percent, compared with a normal of 100 percent, when he came to the U.S.

Doctors here came up with a plan although they had never heard of a child surviving that long with his condition and quickly scheduled open heart surgery. He emerged 13 hours later and was full of life, Mrs. Martin said.

Mrs. Martin said she’s thankful to Camp Boggy Creek because it allows her children to feel normal. Joshua and his brother Joey, who underwent heart surgery shortly after he was abandoned in China, have been campers for four years. Prior to Joshua’s first year of camp, he was self-conscious about his scar and would wear his swim shirt at the pool. But when he returned home from Camp Boggy Creek, the impact was clear.

“The next time I took them to the pool, he was the first kid to rip his shirt off and just jump in the pool. He had lost that inhibition and had lost that self-consciousness that he had about how he looks,” Mrs. Martin said. “He became proud of his scar rather than ashamed of it.”

Camp Boggy Creek has served over 70,000 children and families from across Florida, according to Ms. Clark.    She shared, the children and families do not pay to attend the camp, co-founded by actor/philanthropist Paul Newman and Gen. H. Norman Schwarzkopf. Donations from individuals, corporations, foundations and healthcare partners fund the camp’s nearly $5 million operating budget.

Parents and siblings get to experience the camp during Family Retreat Weekends throughout the year.

The camp serves children with any of 14 different groups of serious diseases, including congenital heart disease. Congenital heart defects are the most common birth defect in the United States, affecting about 40,000 children born each year.

“It (Boggy Creek) normalizes the experience of living for them because they are used to being the last kid who is picked for the race game, or they’re the kid that gets last in the mile race in PE class,” Mrs. Martin said. “There honestly is no other place in the world that will surround them with people who are built just like they are.”