Subscribe for 33¢ / day

LAKE LUZERNE -- Kyle Grant doesn’t get to swim very often.

The 14-year-old spends most of his time hooked up to a ventilator, which extracts breathable air from the atmosphere and sends it through a tube implanted in his throat.

Although unable to speak, Grant smiled and splashed about Thursday as staff at the Double H Ranch helped him navigate the facility’s indoor swimming pool.

"He never gets to do this," said Kyle’s mother, Betsy.

Throughout the summer, Double H hosts up to 125 different children each week with acute sicknesses or disabilities. But it’s the annual Camp Inspiration program that requires the highest levels of medical oversight and mechanical innovation.

Each of the 14 children aged 6 to 16 years old at Camp Inspiration last week live their lives attached to ventilators. The specialized, week-long ventilator program costs the families nothing and is considered to be the most intensive of Double H’s offerings. Camp officials estimated that the ventilator program costs between $1,800 and $3,600 per child. More than 90 percent of Double H’s $3.2 million annual budget comes from individual donors, camp staff said.

Many of the children remain permanently attached to their ventilator, requiring some technological innovation from camp staff.

"We use ‘u-boats’ designed for fly fishing to support the vents in the pool, said Jacqui Royael, the camp’s program director.

Cranes, ramps and lifts provide the wheelchair-bound and typically mute campers access to otherwise attainable activities, including fishing and a high ropes course.

About one Camp Inspiration alumnus dies each year, highlighting the high mortality rates for children afflicted with diseases ranging from multiple sclerosis to complete respiratory failure.

"For these families, it circumscribes their lives," said Dr. Kathleen Braico, the camp’s resident physician. "They have to ask themselves everyday, ‘What can we do with Johnny on a vent?’"

Unlike most of Double H’s programming, families come with their children to Camp Inspiration. It offers the often socially isolated families time to meet and bond with others in similar situations.

"He rarely even gets outdoors," said Albany resident Michele Limbrunner, of her 7-year-old son Kody, while he reels a small perch onto the camp’s dock — his first catch. "We can’t just take off and vacation with a child like this."

As many as 25 doctors and nurses dozens of paid staff are required to run the program. Each camper must have a respiratory therapist by their side at all times.

"He spends so much time in the hospital," Limbrunner said of her son. "We wait all year for this."


Load comments