Erin and Timothy Slivka with their children, Asher and Aspen, and a portrait of their daughter, Ayla, who passed away from brain cancer in June 2022. Courtesy photo

BEDFORD — Four years after losing their daughter Ayla to brain cancer, Erin Slivka and her husband Timothy, co-founders of The Ayla Foundation, will host the first annual Hope on the Green golf tournament on Aug. 3 at Manchester Country Club.

Slivka remembered her daughter as having a personality that was everything from smart and witty to bold and sassy.

“She could command the attention of any room,” said Slivka. “She loved people.”

By the time she was 3 years old, Ayla had already decided that she wanted to be a space scientist.

“That decision never wavered,” said Slivka. “She was fascinated with space and she enjoyed reading and learning about the planets.”

In the summer of 2021, Slivka and her family travelled from their home in Ohio to the Lakes Region for their annual vacation. During that time, Ayla started having trouble walking and speaking. Although they were subtle, the first symptoms had begun to emerge. That subtlety did not last long.

“By the time we got home from our vacation on July 6, 2021, Ayla’s symptoms came on suddenly and severely and I rushed her to the emergency room,” said Slivka.

It took less than an hour for the doctors at Nationwide Children Hospital to determine that she had a brain tumor.

“Later that day, we met our greatest fear as parents. We were told that the type of brain tumor Ayla had was called diffuse intrinsic pontine glioma,” said Slivka. “As a mom, I had an underlying sense that something was off, but never in my wildest imagination could I have imagined it was a terminal brain tumor.”

Known as “cancer’s biggest bully,” DIPG is the deadliest form of childhood cancer with less than 10 percent of patients surviving more than two years after diagnosis, according to the National Cancer Institute. Each year, approximately 300 children, between the ages of 5 and 10, are diagnosed with DIPG. The tumor originates in a part of the brainstem called the pons, which controls vital functions including breathing, heart rate and blood pressure. The pons also controls nerves and muscles associated with sight, hearing, walking, speech and eating. Because of its location, the tumor cannot be surgically removed.

When Ayla went into the hospital, she was unable to walk, speak or use her fine motor skills. Radiation was the only option.

However, after enduring 30 rounds of radiation and qualifying for a clinical trial, the size of the tumor had diminished.

“She could physically do everything a normal little kid could do,” said Slivka.

For nearly four months, things seemed to return to normal. Ayla was able to go to school as well as travel to visit friends and family. Perhaps she would be that rare miracle child who had done the impossible.

“We were so hopeful,” said Slivka. “You never know, and constantly pray, that your child will be the child who beat an incurable cancer. I prayed for that every single morning.”

While Ayla’s medical team, led by Dr. Maryam Fouladi and Dr. Rebecca Ronsley, were able to slow the tumor’s progression, they could not deliver the knockout blow — DIPG was still there.

“Radiation cannot remove the tumor, but it is well known to add, on average, three months to the survival rate,” said Slivka.

By early 2022, Ayla’s symptoms had become significantly worse, which is common with DIPG. This resulted in round-the-clock care, multiple MRIs and 15 rounds of daily sedated radiation.

“As a parent, not only do you have to watch your child battle cancer, but you have to watch them lose their ability to walk, lose their fine motor skills, lose their ability to sometimes talk — all while remaining cognitively aware,” said Slivka. “Everything we did was to get her to laugh, smile and enjoy each day, one day at a time because we never knew what day would be our last with her.”

That day came on June 29, 2022. Ayla was just 6 years old.

“Her journey inspired Tim and I to begin The Ayla Foundation,” said Slivka. “I’ll never forget, when Ayla’s tumor began to progress, the doctors told us to ‘go home and make memories’ because there were no further options for Ayla.”

During Ayla’s year-long battle, Slivka and her husband discovered that research for pediatric brain cancer was severely underfunded.

“We learned that the federal government only allocates six percent of their annual budget for cancer research across all types of childhood cancer,” said Slivka. “DIPG receives zero percent of that budget.”

During the past four years, The Ayla Foundation has hosted fundraisers in Concord, Manchester, Hooksett, Ohio and Florida.

“When your child is diagnosed with cancer, it can feel very isolating,” said Slivka. “We hope to bring families together to help them feel less alone and to advocate and raise funds for much needed pediatric brain cancer research.”

Slivka also said radiation is no longer the lone treatment for DIPG. In August 2025, the U.S. Food and Drug Administration approved Modeyso, a drug specifically designed to attack that form of cancer.

“There is so much hope on the horizon, the research landscape for DIPG has expanded considerably, offering more clinical trials and hopefully one day more treatment options,” said Slivka. “Many researchers and experts agree that if we can unlock treatment options for DIPG, we can potentially unlock treatment options for all cancers, if not a cure.”

Regarding Hope on the Green, Slivka said golf has always been “woven into the fabric” of her family. Slivka said she and her husband got engaged at Manchester Country Club and they would periodically take their children to the driving range, the putting green and the course itself.

“Ayla had this way of making every single day brighter for the people around her and that is exactly what this event is about,” she said. “Hope on the Green is a day filled with community, joy and love, the things Ayla gave so freely. Whether you golf, bid on an auction item or just come celebrate with us that evening, you are wrapping your arms around families who need hope more than anything.”

The tournament’s entry fee is $300 and the fee for the After Celebration is $50. The event will also feature live music, appetizers as well as silent and live auctions. Online registration is available at www.aylasarmy.com/events/hope-on-the-green.

The Slivkas would like to thank Champion Sponsors the Wicks Insurance Group, the Bag Room and the Addision Group.