A beacon of hope for seriously ill children and their families
By Katie Cole
Tim Head remembers when he didn’t know the meaning of the Children’s Harbor lighthouse. That was more than 15 years ago when the Pelham resident would visit Lake Martin to fish. It was before 1996 when his daughter, Jennifer, was born with spinal bifida, a developmental birth defect that left her a paraplegic.
“I’d seen the place before, but I never knew what it was,” he said.
The Head family was introduced to Children’s Harbor through Magic Moments, an organization that helps grant wishes for Alabama children with life-altering illnesses. About eight years ago, the family visited the Lake Martin campus to attend a Magic Moments camp, one of several camps held at Children’s Harbor each year.
The Heads are one of thousands of families that have been served by Children’s Harbor since it was founded by Ben and Luanne Russell in 1990. The non-profit organization has grown considerably since then.
The original campus on Lake Martin has expanded with wheelchair-accessible cabins and a conference center. The biggest expansion was the 2001 opening of the Children’s Harbor Family Center in Birmingham, which partners with Children’s Hospital of Alabama to provide free counseling and support to young patients and their families.
This year brings more growth, including new camps, the introduction of a program intended to help young patients transition into adulthood and a renewed focus on fundraising.
But the mission, as symbolized by the lighthouse, has stayed the same – “helping children and families through the treacherous and troubled water in which they sometimes find themselves.”
“The mission is to serve seriously ill children and their families,” Executive Director Jim Ray said. “As we’ve worked that mission out, we have identified through our partnership at Children’s Hospital an opportunity to make the lives of families with seriously ill children much more normal than they ever thought their lives would be.”
For some people, Children’s Harbor remains a bit of a mystery, like it was for Tim Head. They recognize the lighthouse and they may have visited the campus to attend a wedding at Children’s Chapel or Church in the Pines.
Children’s Harbor on Lake Martin, which is located south of Kowaliga bridge, hosts camps sponsored by organizations serving sick or disabled children and their families each year.
One thing that often confuses people about Children’s Harbor on Lake Martin is how the camps operate, according to Tammy Jackson, director of community relations. The camps are sponsored by independent organizations to whom Children’s Harbor donates its facilities. Organizers approach Children’s Harbor with plans for the number of campers, medical staff, counselors, activities and food.
“We also infuse many of these camps with our support and volunteers,” Ray said.
This year, 19 camps will be held on the Lake Martin campus, including Camp Smile-A-Mile for children with cancer, Camp Clot Not for children with hemophilia disorders, Wired Together for children with chronic heart disease and Vent Kids for families who have a child on a ventilator.
The 64-acre campus is split into two sections: the Mariner’s Adventure Camp and Harbor Lodge.
The Mariner’s Adventure Camp resembles a typical camp with a mess hall, activity buildings, adventure course, tree house, swimming pool, houses and cabins.
The difference is most of the buildings and activities were designed to accommodate disabled children. The walkway leading up to the tree house is wide enough for a wheelchair. While some of the cabins are bunk-style, others are simply houses, which offer a sense of familiarity for autistic children, who can become overstimulated by new environments.
The activities are also adapted for sick or disabled children. Campers ski, tube and participate in team-building activities.
“It’s a great place for the kids to come and participate in all these things they see other kids do but they never get to do,” Head said.
The 11-acre Harbor Lodge, which was completed in 2007, includes a conference center as well as 11 cabins that have four apartments that each sleep a family of five.
Families make good use of the cabins as most of the camps are open to the parents and siblings of a sick child. Unlike some of the older cabins, these buildings are completely wheelchair accessible, including bathrooms, which gives some campers a rare taste of freedom.
“The first year it was open a young man, I think he was 16, took his first unassisted shower,” Jackson said.
Jackson said the camps offer many families their only chance at a vacation. There are programs throughout the day for both ill children and their healthy siblings so parents get a chance to relax.
Another benefit of the camp, Head said, is gaining insight into a disease from families in similar situations.
That’s another thing that’s been a blessing for us is networking with the families,” he said. “Unless you talk to parents in the same situation, you really don’t understand what it’s going to be like. We’ve talked about everything from what’s the right wheelchair, to a doctor using a new technique in a surgery, to preparing for college.”
The Family Center
Although it was opened 11 years after the Lake Martin campus, the Children’s Harbor Family Center in Birmingham is most patients’ introduction to Children’s Harbor. The Family Center is now the heart of operations for the organization.
Located on the second floor of the Children’s Harbor Building on the Children’s Hospital campus in Birmingham, the center has become an oasis for sick patients and their families. The center offers free, confidential counseling and support services for Children’s Hospital patients, but, much like its Lake Martin counterpart, it also gives young patients and their families an escape from the harsh realities of living with an illness.
Families supporting a child with a serious illness are faced with overwhelming tasks – adapting to and coping with the diagnosis, identifying resources, maintaining good relationships, maintaining basic lifestyle and facing an uncertain future. The Family Center helps ease that process.
“We’re the beacon,” said Audrey Lampkin, director of the Family Center. “We’re the anchor. We’re the life raft. If we can’t get (the resources) to you on the spot, we know who can. That’s pretty much our mission. When a family is diagnosed with a chronic illness, they do not want to run around looking for services.”
The Family Center receives between 35-40,000 visits each year and about 200-280 people are referred for counseling.
Children’s Harbor first began working with Children’s Hospital in 1995 and two years later, a vision for the Family Center was conceived. The hospital organized a task force who identified the illness populations that appeared the need the most support and Children’s Harbor worked with those families, many of whom were familiar with the Lake Martin camps, to develop the Family Center.
Children’s Harbor services were first offered to families with a child diagnosed with cancer. Services were next provided to those with sickle cell, pulmonary and renal populations.
The resulting Family Center, which was dedicated in 2001, is organized into two primary sections: the resource center and the counseling center.
With its nautical theme, the resource center is an escape from the hospital setting. Aluminum fish hang from the ceiling, blue tiles line the curving walls – no long, straight hallways here – and portholes offer glimpses into the activity rooms.
The resource center is home to a toddler play area, library, game room, half-court basketball court, fitness center, hair salon, game room, laundry room, computers and phone booths.
“Many of our families refer to this as their child’s ‘no-needle zone,’” said Karin Scott, director of financial development and public relations for the Birmingham area, a recently created position. “Everything about the Family Center is designed to provide some normalcy.”
The resource center activities are run almost entirely by volunteers and donations. Churches, organizations, businesses and individuals donate books and games or sponsor meals and activities.
The Children’s Harbor Family Center employs several licensed therapists who are trained to address the emotional needs and problems that arise when a child is diagnosed with an illness.
“Often when children are diagnosed with a very serious illness the families can experience immediate distress and are in need of both short and long term support,” Lampkin said.
A diagnosis not only affects the sick child but also the family members. Families may experience an array of feelings from anger, anxiety and depression, to feelings of isolation, fear, jealousy and strained relationships.
In the counseling center, families learn to cope with those emotions through individual or family counseling, support groups, parental training and educational services.
Late in 2009, Children’s Harbor started the Education, Career Development and Transition program, which is designed to help families and patients with the aftermath of a diagnosis. The program fills an important gap Children’s Harbor learned was missing from its families’ support systems.
Even curable diseases often affect patients and their families long after treatment. Families have to deal with everything from missed school days to helping patients become independent.
Janice Crow, coordinator of the training program, works with the families and patients, assessing their skills, tutoring those who are behind in school, assisting with college applications and helping them find viable career paths.
Children’s Harbor – the counseling, the camps, the activities at both campuses –is free to patients and their families.
Although the camps are responsible for their own funding, Children’s Harbor provides free rentals, a practice that has been extended to more organizations each year. In 2010 Children’s Harbor donated more and more than 12,000 nights of camp to 15 illness groups. In 2011 the projection is 14,000 nights to 19 groups.
“One thing that’s changing a little bit is more and more is the camps are needing us not only to provide free facilities, but they need us to also provide funding for their food, their activities and the other things they do while they’re here,” Ray said. “A lot of these camps have depended on drug companies, pharmaceutical companies, foundations and businesses to sponsor them and those are the top three areas that have been hit by the economy. Our donors have kind of filled the gap.”
Those donors have shown no signs of slowing during the recession, according to Scott. While charitable giving is down 12 percent over the last two years, Scott said Children’s Harbor has seen an increase in its Anchor Society donors – those who give $5,000 or more annually – from 103 in 2009 to 136 in 2010.
Other sources of funding include
- Children’s Harbor Thrift Store – The store brought in about $225,000 last year.
- Events – Numerous organizations and businesses hold fundraisers for Children’s Harbor. Previous events include a performance by the Alabama Ballet, golf tournaments, barbecue cook-offs and book drives.
- The Friends of Children’s Harbor – This organization sponsors a home tour and auction on Lake Martin each year.
- Grants – Children’s Harbor receives grants from foundations such as the Crippled Children’s Foundation, Hill Crest Foundation and others.
- Rentals – After illness camps are scheduled each year, Children’s Harbor rents many of its facilities on the Lake Martin campus for weddings, receptions and conferences.
- Individuals – The organization receives donations big and small from individuals.
Children’s Harbor employs 14 people on its Lake Martin campus and 13 in Birmingham. It relies on a steady stream of volunteers to maintain the facilities and provide activities to the families.
Some, like Tim Head, are people who have a connection to Children’s Harbor. Head, who now serves on the Magic Moments board, also sponsors a clay shooting tournament each year through his company.
Other volunteers, including many Lake Martin residents, have looser connections.
Real Island residents Charlotte and Will Denton attend Church in the Pines on the Children’s Harbor campus, so they have been familiar with the organization since they moved to Lake Martin six years ago. They have a 6-year-old grandson with autism, which was what first attracted Charlotte Denton to volunteer at Children’s Harbor at Camp Autism Smiles about four years ago. Her grandson has never attended the camp – he’ll be a first-time camper this summer – but the Dentons soon found themselves volunteering for other camps. They give boat rides to campers. Their passengers have included burn victims, autistic children and a young girl on a respirator.
One of Charlotte Denton’s favorite memories is of a young boy who was paralyzed from the waist down. The camper asked Will Denton if he could help drive the boat. After being told yes, the camper hopped to the floor from his seat and crawled to the driver’s seat because he was so excited to help.
“The children are a real pleasure,” she said. “Some of them have never been on a boat.”
Joe and Jenny Luttrell, a Hoover couple who own a home on the lake, turned volunteering into a family event. Joe and Jenny also offered boat rides to campers last summer, while their two teenage daughters served as counselors. They plan to repeat the experience this year.
“You feel like you’re getting more out of it than you’re giving,” she said.
It’s families like the Heads, Dentons and Luttrells as well as the hundreds of donors listed in each issues of The Beacon, the tri-annual newsletter, that allows Children’s Harbor to serve so many.
“The people we serve are not our donor base,” Scott said. “Some of them bubble up and want to give back and have the capability of doing that, but many, many families simply receive the open-heartedness of donors they will never meet, they will never know personally. It’s giving in the purest form.”
How to contribute
- Planned gift – The Lower Lights Society was created for donors to leave a planned gift to Children’s Harbor. Planned gifts can be made in cash, bequest, insurance, property, securities, retirement plan assets and charitable trusts.
- Memorials and honors –Donations to Children’s Harbor may be made in someone’s honor or memory. Call Jim Ray at 334-857-2133 or firstname.lastname@example.org for information about planned gifts or donations.
- Children’s Harbor Thrift Store – The thrift store is open Friday and Saturday from 10 a.m. to 4 p.m. Donations of “gently used” items are tax-deductible and accepted during store hours. Contact manager Debra Krauel at 334-857-2008 or MartyKrauel@ChildrensHarbor.com.
- Volunteer – Children’s Harbor relies on volunteers to assist with camps and maintain the campus. On Lake Martin, volunteers often provide boat rides for children or plan activities, such as arts and crafts or fishing trips. Contact Tammy Jackson at 334-857-2133 or TammyJackson@ChildrensHarbor.com.
Donations should be sent to:
Jim Ray, Executive Director
1 Our Children’s Highway
Alexander City, Al 35010-8620