By Sarah Kuper
Parents of children with cancer have a lot on their plates.
In the Birmingham area, they have access to a wide array of doctors and treatment plans through Children’s of Alabama, a major pediatric research center.
But medical care isn’t the only challenge they face as they fight to get their children well. There are local groups that also can help with money for parents faced with unexpected bills, a smile for families becoming discouraged, and hope for the future when the medical picture looks bleak.
The need is monumental. Nearly 17,000 children in the U.S. are diagnosed with some type of cancer every year, according to the American Childhood Cancer Organization. September is the month designated to recognize issues surrounding childhood cancer. But for the kids and their families, facing cancer and its aftermath is a daily fight.
Leaders at the local nonprofits Smile-a-Mile, Hope for Autumn and Open Hands Overflowing Hearts say they are coming at the problem from different directions but with one goal – caring for families affected by childhood cancer.
Healing With a Smile
Smile-A-Mile, formerly Camp Smile-A-Mile, is a local nonprofit that’s mission is to provide hope, healing of the spirit and love for the whole family during the childhood cancer journey.
A new facility on Second Avenue South near Children’s, called Smile-A-Mile Place, is home to programs and resources for families. Professionals help families navigate emotions and hardships from the day a child is diagnosed. But they also are there to help alleviate the trials of childhood cancer with fun activities and celebrations.
Begun as a summer camp program for kids with cancer, Smile-A-Mile now has year-round programming and sometimes works with patients’ doctors to learn what a child is up against and how best to care for their non-medical needs.
Development Director Savannah DeRieux said one of the most amazing things about Smile-A-Mile is the relationships.
“There is something so powerful about being able to lean on someone who knows exactly what you are going through,” DeRieux said, “Mothers can be the best resource and mentors to each other.”
Smile-A-Mile is able to provide resources and programs through fundraising events such as the Monkey C Monkey Run on Sept. 16.
“People need to be aware of what is available in your community. You never know when your family member may be affected,” DeRieux said, “It could be anyone.”
Meeting Everyday Needs
While children deal with the physical and emotional toll cancer takes, oftentimes their parents or caretakers are left with very real financial and logistical hardships.
Hope for Autumn is a childhood cancer nonprofit that aims to help families take care of medical bills, transportation, employment and other unforeseen costs.
The organization began with a backyard crawfish boil. Guests brought donations to help families with medical costs.
Executive Director Amanda Knerr’s family was among the first to receive help from the group when her daughter was fighting a rare ovarian cancer at age 7.
“The event grew and Hope for Autumn was established in 2012,” she said, “We started out helping one or two families a year and now we help families from all over Alabama.”
While Hope for Autumn does raise money for cancer research, much of its money goes to everyday assistance, helping with things such as copays, mortgage payments and car repairs.
The organization works closely with social workers at Children’s to find ways to help those who need it most.
“It’s not always those that have huge community support. There are a lot of families that don’t have help from their church or family,” Knerr said, “Some are already living in extreme poverty and then their child gets cancer.”
Knerr said often one parent has to quit his or her job to take care of a sick child.
So far this year, Hope for Autumn has given $45,000 to help needy families.
Knerr said she knows there are a lot of resources for children with cancer and their families, and Hope for Autumn is there to fill in the gaps.
“With my daughter, we used all the other local support resources,” she said. “We didn’t want to repeat what others are doing because we highly respect them. We found other places where there is a need too.”
In addition to the annual crawfish boil, Hope for Autumn will host an event called Fall Fizz and Fare on Sept. 29 at the Redmont Hotel. Guests will taste sparkling wine and craft beers plus eat dishes prepared by local chefs.
Ending Childhood Cancer
In 2013, Kayla Perry Funk was diagnosed with neuroblastoma at age 19. She fought through treatment after treatment, working with many doctors. Each one seemed to say the same thing, “I don’t know.”
It was her frustration with this phrase and the lack of research on her type of cancer that led her to found Open Hands Overflowing Hearts.
The chief end of the organization is to raise money for research on childhood cancers, especially ones that have lower cure rates.
Funk’s mother, Christen, is the former executive director of OHOH. When Kayla was diagnosed, her family became suddenly aware of the prevalence of childhood cancer and the profound lack of research.
“We didn’t know until we were in the situation and saw how common it is. There are new diagnosis every day and we aren’t seeing better cure rates,” Perry said, “In fact, a lot of the chemo and treatment plans for Kayla were 30 years old.”
Through fundraisers such as Run for Their Lives and the Gold Gala, plus support from area merchants, OHOH has given $265,000 to childhood cancer research at Children’s and other pediatric cancer centers.
Though OHOH gives money to centers across the country, Executive Director Laura McCormick said being a local nonprofit helps keep the money moving.
“So many decisions can be made here locally,” she said, “We don’t have all the management steps between here and a national office so the money can go straight to our mission and resources.”
Perry is excited for the research that’s made possible with money from OHOH but she said she knows there is a long way to go.
“It is still frustrating because it doesn’t seem like they are making much headway with the cancers with lower cure rates.”
Plus, she said, it all just seems unfair.
“Childhood cancer – you don’t get it because you did something wrong liking smoking too much. There is no rhyme or reason as to why some kids get cancer and why some survive it and some don’t.”
Keeping in the Forefront
Whether it is giving a family an outlet to feel normal again, helping pay rent until a Social Security check comes through, or funding cancer research labs, these three organizations are working to take care of the whole patient.
During the month of September, leadership from all three organizations hope childhood cancer becomes top-of-mind and the public finds ways to support families when they need it most.
For more information on Childhood Cancer Awareness Month events hosted by these organizations, visit smileamile.com; hopeforautumnfoundation.org; and openhandsoverflowinghearts.org. ❖