Every year in July, 25 children diagnosed with pulmonary hypertension are invited to attend a special summer camp where they can experience a few safe, fun-filled and educational days of camping without having to worry about the limitations their condition imposes on them.
Pulmonary hypertension is a fatal cardiopulmonary condition with an average survival of 2.8 years when untreated. Today, there are 12 approved medications for adults with PH, but none have been cleared for use in pediatric PH patients. Due to these major unmet medical needs for pediatric PH patients, they often experience a significantly reduced quality of life and are unable to engage in the same fun activities as healthy children.
However, since 2007, children with PH have had the opportunity to partake in a summer experience that they usually only ever see on TV at a camp called Echo Hill Outdoor School on the beautiful eastern shore of Maryland. Here, Echo school’s staff shares lessons on ecology, history, and nature, and guides campers through physical activities such as swimming, zip lining, canoeing, dancing, and many more. At this special summer camp, the children don’t have to worry about keeping up with other healthy campers, and instead enjoy each activity at their own pace. This year, the camp is running between July 27 and August 1.
“Our mission is to assist our campers as they safely go at least two steps beyond their comfort zone,” said medical director Dr. Brian Hanna, one of the leading pediatric pulmonary hypertension specialists in the U.S. “These kids have had or are waiting for heart and lung transplants or are otherwise dependent on multiple daily treatments. Heart Camp is the first time many of them have spent a full day without a parent or a night away from home, let alone an entire week in an environment that challenges them physically, socially and even psychologically.”
Camp staff volunteers include about a dozen medical professionals, many of whom have worked with Dr. Hanna at the Children’s Hospital of Philadelphia. They selflessly donate some of their vacation days in order to provide these children with a once in a lifetime experience, along with regular treatments, monitoring, counseling, and efficient emergency care.