Established in 1978, Edmarc Hospice for Children was the first hospice in the nation designed specifically for children. Edmarc is the only pediatric hospice organization in Hampton Roads, Virginia. Edmarc was founded by the members of Suffolk Presbyterian Church in Suffolk, Virginia, along with their minister who was dying of cancer, and a young couple whose only son was dying of a progressive neuromuscular disease. The minister’s name was Edward; the boy’s name was Marcus. The agency is named in their memory. In 1982, Edmarc Hospice for Children received a $300,000 grant from the Birthday Offering of the Presbyterian Women. This generous community gift funded the development and expansion of the hospice, home health care, and bereavement support services. Edmarc serves a wide geographic area that includes the Virginia Peninsula and all of Southside Hampton Roads. Edmarc serves children with life-limiting illnesses and their families, without regard to their ability to pay for services. Since Edmarc’s inception, we have served over 1100 families; 498 of the children have died. Our average daily census is 74 families (259 people) receiving hospice services and 185 families (674 people) in bereavement care. Edmarc is a non-profit, private hospice with a voluntary Board of Directors. All health care services are provided in the child’s own home.
To try and describe my daughter to you would take hours. Taylor was beautiful, kind hearted, brilliant,and hysterically funny. She was healthy and loved to draw and paint. She was a spelling whiz and loved to do what we called ‘brain bruisers’ or solving hard math problems in your head. We traveled. She saw the mountains and the ocean. We went to Disney World, before she got sick and after for her Make-a-Wish trip. She met a rockstar who adored her, flew on airplanes, camped and went dolphin watching. One of our favorite things to do together was to watch meteor showers. We would get up in the middle of the night and lay in sleeping bags in our front yard. One night she counted over 80! Taylor did a lot of really neat things in her short life.
Edmarc was there for us when my daughter was battling for her life. I’ll never forget when the hospital told us that Edmarc would be calling. They called and left messages for several weeks. I didn’t return their calls. “A hospice?”, I thought, “No way. Hospice means you are going to die. We want to continue with treatments and you can’t do that with hospice.” Boy, was I wrong.
The guilt of dodging their calls became too much, so I called them. I told them, “Thank you but no thank you and please stop calling our house” They began to describe their services to me. At-home nursing visits to draw blood and check vitals and then they would take her blood work to the hospital so we wouldn’t have to make the 40-minute trip to CHKD just for that. Nurses on call 24/7. Social workers to talk to, volunteers to cut our grass, baskets of food and gifts at the holidays, the list went on and on. “How much will this cost and will my insurance cover it?” I asked. I was told it didn’t matter. Edmarc provides their services without regard to ability to pay. I was amazed when I later learned that Edmarc has been helping kids and families for 37 years and receives less than 10% reimbursement from insurance companies. In addition, they receive no federal, state or local government money. They rely on donations. Donations from fund raisers, civic groups, companies, United Way contributions and individuals to name a few.
Edmarc has continued to help my family since my daughter’s death with things like bereavement support groups, holiday gatherings, an annual overnight camping trip and remembrance services. We have needed them and they have always been there for us. Without Edmarc, I don’t know what we would have done. It’s something I couldn’t even imagine.
– Amy, Taylor’s Mom