“I will make sure as many families as possible see their child enjoy a full childhood.”, Amber Bender, Addi’s Faith Foundation
“I have four kids,” says Amber Bender, former elementary teacher in Kingwood, Texas, where she, her husband Tony Bender (also a former teacher, now in pharmaceutical sales), and their children live. Trenton is 15, Riley 13, and Olivia 7. Missing is Addison, or Addi for short, who would have turned 11 on the 2nd of January 2017. Addi passed away from cancer more than 10 years ago.
In the years since, Addi Bender’s passing has given rise to the establishment of the non-profit Addi’s Faith Foundation. The Foundation, which was set up by Tony and Amber Bender—Amber is the Founder and Executive Director—has a fourfold mission: it offers financial assistance to US families with cancer-inflicted children under the age of 21; it provides funding for childhood cancer research; it caters to children brain-tumor survivors, offering them scholarships; it offers grief support to families who have lost a child to cancer.
Childhood cancer has an incidence of more than 175,000 per year, and a mortality rate of approximately 96,000 per year. The most common cancers in children are childhood leukemia (34 per cent), brain tumors (23 per cent), and lymphomas (12 per cent). Addi was diagnosed with a large tumor in the postier fossa region (brain stem), and a smaller tumor located in the center of her brain at the age of just 16 months. “Atypical Taratoma with Rhadbdoid Features”—medically—called for an aggressive treatment.
“When first learning of Addi’s brain tumor, I was not surprised. I knew something was very wrong and although I desperately didn’t want it to be true, I highly suspected a brain tumor. Of course, when my suspicions were confirmed, I was devastated. Instantly, my world was flipped upside down and life would never be the same again. Those first moments and days are a blur. It’s a whirlwind of doctors and tests and words that are difficult to pronounce and even harder to understand. There is also a total disconnect. It’s just so hard to believe that this is actually happening to your sweet, innocent baby,” says Amber Bender.
Fighting an uneven battle
“What also came as a shock, was the lack of treatments available. The only thing worse than hearing those four dreadful words ‘Your child has cancer’, is then finding out that there is little they can do to treat it. Naively, at first, I was thinking that she would have surgery, go through treatment, and then be OK. I had no idea that there were so few options and so little known about her disease,” Bender continues.
Going on an emotional roller coaster, the Benders went back and forth between losing and gaining hope. The mother had the prescience that they were fighting an uneven battle, but refused to buckle down under her daughter’s weight of cancer. But Addi’s prognosis worsened.
“I knew that Addi’s chances of survival were less than 10 per cent, yet I always maintained hope. Up until her final breath, I believed that she could be healed, that a miracle could happen. You have to have that hope. Hope is a true gift, given in response to faith, which provides light even in the darkest of times. Hope, Faith, and Love…I clung very tightly to all three. Sounds cliché, but it’s true.”
An amazing little girl who found the strength to laugh even when tumors distorted the innocence of her face, and was put through soul-sucking surgeries and chemotherapy treatments at a headscratchingly young age died just a few weeks shy of her second birthday.
Losing a child is ecumenically accepted to be one of the most formidable pains in life. It is only natural evolution that parents die first. Still, Benders pushed beyond ineffable pain and towards helping other who might still have a chance.
“We saw how grossly underfunded childhood cancer research is,” says Bender.
According to her own reports, the National Cancer Institute gives less than four per cent to cancer treatment, and the bigger organizations like the American Cancer Society gives less than one per cent, and the pharmaceutical companies give basically nothing, and the burden lies with organizations like AFF to ensure that progress is made.
Grim childhood cancer statistics is one of the driving forces behind Addi’s Faith Foundation. “Cancer is a horrible disease, but it is especially hard when it’s a child. They should not be spending their childhood in hospitals and at doctors’ appointments. They should be outside playing and going to school. Cancer robs these kids of so much, and their childhood is something they can never get back. Yet, most of these kids put on a smile and remain positive and optimistic. They experience things that would take most of us down, yet they fight with a strength and courage that is amazing to see. It’s these kids that inspire me on a daily basis. I fight for them, “says Bender, a dynamo oozing of resolve and purpose.
To date, AFF has awarded a total of $1 million towards its mission of funding research and helping families. Only for research, AFF has already given $700,000 to MD Anderson Cancer Center for a project that is seeking therapeutic options for recurrent brain tumors in children, while it has also provided assistance to 134 families giving away over $200,000.
“Creating Addi’s Faith Foundation, although always painful, has also been a source of healing. I desperately want to find better treatment options and ultimately a cure for childhood cancer. There is a cure out there, and together, we will find it!” exclaims a spirited Amber Bender, who cites God, family and friends as her utter sources of inspiration (she later says Addi is in Heaven, happy, healed, and that they will meet again someday).
“Your child has cancer…Four simple words that can flip your world upside down in a heartbeat,” she repeats. “It’s every parent’s worst nightmare and yet today, and tomorrow, and every day after that, 46 children’s parents will hear those devastating words and that nightmare will become their reality.”
“Finding a cure for childhood cancer is my utmost dream, but until that day comes, I will make sure as many families as possible see their child enjoy a full childhood.”
Stav Dimitropoulos is a journalist and writer who has appeared on CBC, CBS Radio and FOX Channel, and has written for In The Fray, YourTango, Gadgette and many more. Facebook | Twitter: @TheyCallMeStav