By Katie Fallon
Butterflies are a source of beauty to just about everyone. But to the families of children with brain tumors, they are not just beautiful, but also a source of hope.
The Sandy Springs-based Brain Tumor Foundation for Children supports young patients and their families through the emotional and financial strains that follow a tumor diagnosis.
The foundation’s most noticeable source of support is through its Butterfly Fund, which provides financial assistance for expenses such as rent and mortgage payments, utility bills, car payments, wheelchair ramps, stair lifts and funeral expenses.
The foundation also provides emotional and educational support to families as well as funding research to find better treatments and cures for brain tumors.
While the issue they support is serious, the foundation’s Sandy Springs headquarters could not be more cheerful. The offices, which are located in Northside Tower near the intersection of Roswell Road and Hammond Drive, are full of teddy bears, toys, brightly colored paintings and photos of children whose families have received assistance from the organization.
Mary Campbell, executive director of the Brain Tumor Foundation for Children, said the organization was started in the 1980’s to help families who find themselves in sudden financial binds after beginning the many treatments and hospital visits that accompany a brain tumor diagnosis. The emotional support they provide includes referring families to support groups of other families who have gone through the same situations.
“The emotional and educational support is really big, but so is the financial support,” Campbell said. “Very often, the mother was working and just getting by financially and all of a sudden, she has to give up her job. People send us comments that they didn’t know what they would have done if we didn’t come along.”
Families are referred to the foundation following their child’s diagnosis when they are given a large book, Campbell said, on what steps to take in the following weeks and months. Once they fill out a form from the foundation, they are contacted directly to see what needs they might have. Campbell said the need in Atlanta alone is large.
“We’ve got probably several hundred kids in the metro area that we know of who are living with brain tumors,” Campbell said. “Children’s Healthcare of Atlanta sees a lot of kids. It seems like it has gone up to maybe 125 a year they diagnose.”
Bonnie and Mitch Acker of Sandy Springs received assistance from Campbell and her staff. Their daughter Jillian was just two months shy of her eleventh birthday when she was diagnosed with an epidermoid brain tumor in May, 2004. The Ackers learned about the Brain Tumor Foundation for Children when they attended a fundraiser at the Marcus Jewish Community Center in Dunwoody. The event was hosted by Jillian’s neurologist Dr. Robert Flamini and his wife Gail, who lost their daughter Margot to a brain tumor the previous year.
Acker said her family was helped mostly by the emotional support it received.
“[Campbell] gave me names of moms whose children had the same surgery my daughter did,” Acker said. “That gave me a lot of piece of mind.”
Now as a thriving student at the Davis Academy, Jillian no longer has signs of her tumor, but Acker said her daughter won’t be considered safe until she is tumor free for about nine years. Consequently, Jillian still must have annual MRI’s to check for signs of the tumor that Acker described as being like gum that’s extremely hard to remove from the nerves in the brain.
“It could come back at any time,” Acker said. “It’s always a monkey on our backs.”
No matter what her daughter’s diagnosis, Acker said her family has remained in contact with the foundation and has even joined in its many fundraisers. While the organization does receive grants and donations from individuals, it relies heavily on fundraisers. Two of its biggest annual fundraisers are a golf tournament in May and William’s Walk in the Fall.
This month, in fact, the organization has a number of fundraisers throughout the state.
On April 22, for example, the foundation will host “Flight of the Butterflies,” an event that will include a silent auction, music, dinner and dancing.
The auction will not only feature professional art pieces, but also butterfly canvases created by volunteers and brain tumor survivors. Each piece is a small canvas that is painted in honor or memory of a child helped by the foundation. The paintings also incorporate an interest or hobby of the child, such as race cars or cheerleading.
Entertainment at Flight of the Butterflies will include Riverwood High School senior and jazz pianist Joe Alterman as well as singing by “Just the Two of Us.”
Just a day after Flight of the Butterflies, the foundation will host its fifth annual Owen T. Wheeler Golf Classic at the Trophy Club of Apalachee in Dacula. The following day, the Children’s Spring Baseball Classic will be held at Turner Field in Atlanta. The Classic will benefit the foundation efforts at Children’s Healthcare of Atlanta.
While the money that supports the foundation comes from a number of fundraising sources, the people it helps come from a select number of hospitals. Recipients of the funding must have a child receiving treatment at one of seven designated hospitals. Most are in Georgia, but two others are located in Gainesville, Fl., and Nashville, Tenn.
“The foundation for a long time was strictly Georgia oriented,” Campbell said. “Now we have started branching out a little bit. There really are relatively few children with brain tumors compared to other diseases.”
The hospitals within the state that the foundation works with include Children’s Healthcare of Atlanta, the Medical College of Georgia in Augusta, the Medical Center of Central Georgia in Macon, Backus Children’s Hospital in Savannah and Columbus Medical Center.