Why Hope with Heart?

There were Mended Hearts and Zipper Clubs for adults with heart disease. There were parental support groups. There were some excellent “wish groups”. There were camps for children with various life threatening illnesses and there were camps for people with developmental disabilities. Until 1989, there was no camp, in the United States, for children with heart problems that didn’t eliminate the sickest among them or eliminate the poorest of them. Those in operation had restrictions. They are also far from the New York Metropolitan Area. The cost of travel added to camp fees made such camps prohibitive to so many.

Approximately one of every one hundred children suffers from a heart defect. For most of these youngsters, the problem is congenital and has existed since birth. The heart defect often presents serious limitations and often is life threatening and sometimes life claiming. These children learn early to watch out for themselves, to live by limitations. It can be scary. Coping with such problems during a child’s development years can present confusion and anxiety. Except for their immediate family and the health care professionals in their lives, most people do not understand the needs these youngsters present.

Children with heart problems often spend their childhood under close supervision. This fact coupled with their physical limitations makes childhood friendships and bonding very difficult. They learn early to fear a “routine” visit to the doctor. They know it might result in painful procedures, surgery, and lengthy recuperations. They miss school. Classmates don’t see a visible change in their appearance and don’t understand the child’s illness.

Children with heart problems live with guilt and the fear of unasked questions or, if asked, the questions are often unanswered. They wonder about themselves, their peers and siblings wonder too. Why don’t they play contact sports? Why can’t they go on field trips? Why do they go to the hospital so often? They look fine. They have normal intelligence ranges. It’s what’s inside that’s different. Some will live with a lifetime of disability and unfortunately, some will not live to adulthood.

These kids and their families live with a great hope. The hope is that they will grow to maturity and that as they do their lives will focus on the positive attributes they possess. They need to be encouraged to discuss their health, their limitations and to understand that their situation can provide them other qualities and talents. They need to walk proudly and with self-assurance. One tool available to encourage their positive attitudes is for these kids to witness each other. This they do at Hope With Heart.

Established as a summer camp experience, Hope With Heart, provides year round support and friendships for its campers. The camp, now in its tenth year, is unique because it accepts high-risk children with limited life expectancies. The camp has children with varied heart problems such as valve replacements, pacemakers and transplants. Some youngsters come to Hope With Heart with scars of abuse, guilt, and emotional trauma. Others come from well-adjusted family units. Some are foster children or children being raised in other than traditional family settings. Hope With Heart is a diverse group. Each season sees representatives of various races, ethnicity, and creeds. At Hope With Heart our philosophy and policy is simple – if a child has a serious heart problem she or he belongs at Hope With Heart. Hope With Heart works equally with every child brought to its doorstep, or rather, its swimming pool.

There are no fees or expenses passed on to parents or guardians. While some families and friends assist with fundraising and others do make financial contributions to Hope With Heart, no financial expectations are placed upon families of campers. Medical care expenses already overwhelm many families. Families are expected to provide an annual physical and EKG.

While most participants come from New York and New Jersey, there are no geographic restrictions. Some of the children have come from Ohio, Rhode Island, Virginia, Pennsylvania, and Washington, D.C. While families are requested to provide for transportation, Hope With Heart will cover travel expenses if necessary and if financial resources are available.

During its first two seasons, Hope With Heart functioned as a support group sponsored by the American Heart Association. As it grew and developed, Hope With Heart was viewed as a direct service program and became affiliated with Mended Hearts, a tax-exempt organization with organized groups throughout America. Today, Hope With Heart is an independently incorporated, not-for-profit, tax-exempt organization. Our friendships with Mended Hearts and the Heart Association continue. A fully developed board of directors, with significant parent representation, participates and oversees all Hope With Heart operations. Liability, board and worker’s compensation is provided.

Hope With Heart’s camp session is usually eight days in length. Counselors and other staff arrive the evening before. This provides staff an opportunity to review the needs, medical and otherwise, of their camper group. Each year, Hope With Heart, registers between thirty and forty youngsters.

A pediatric cardiologist works closely with Hope With Heart as Medical Director. He reviews all applications for appropriateness and is on call throughout the camp session. He participated in the development of a full medical protocol utilized throughout the week. Hope With Heart provides all normal camp medical needs. In addition, a heart monitor, oxygen, and other heart related medical needs are on the premises, under the supervision of the registered nurse. While campers bring their own individual medications and supplies, the nurse keeps extra medications available as prescribed by our Medical Director.

A full time camp director, an activity supervisor, and three or four additional counselors per camper cabin are hired directly by Hope With Heart. One of the founders is not a parent of a camper. He functions as liaison to parents throughout the session. Other parents volunteer for certain “behind the scene” needs.

Activities may include swimming, horseback riding, bowling, science activities, modified and well-shaded sports activities, arts and crafts, nature walks, and campfires. Videos, plays, group activities, casino night (board games) etc. are planned for evenings. A clown, a karaoke player, and animal shows may visit during the week.

Each year wonders happen. The children open up to each other and to their counselor in ways they normally don’t do at home or in school. Hope With Heart is their safety net, a safe environment. They see each other’s scars. They talk about their hospitalizations and compare hospital food and play rooms. They become friends. Through Hope With Heart they know they are not alone. They share their fears, dreams and just plain fun! In a word, the Hope with Heart camper gets to have the good old fashion experience known as summer camp!