Adam and Erin Engle could have crawled into a very dark place when they lost their son to pediatric brain cancer nearly six years ago, and no one would have blamed them.
Instead, the Engles turned a negative into a positive and started Griffin's Guardians, a non-profit foundation in their son's memory that has since raised more than $1 million to assist countless other sick children in central New York and their families, help fund medical research projects and bring awareness to children's cancer.
"We wanted to continue Griffin's legacy," said Adam Engle, Griffin's father. "We saw what people who were less fortunate than us were going through. We wanted to help them out."
Griffin Engle died Sept. 12, 2014 after a brief battle with glioblastoma multiforme, an aggressive form of brain cancer. It is fairly common, accounting for approximately 15 percent of all brain cancers and affects approximately three per 100,000 people, but is extremely rare in those 20 and younger, according to the National Institutes of Health.
Doing something to honor Griffin's life and continue his legacy while also helping other families going through the same horrific experience helped the family cope.
"We wanted to do it to help other people," said Engle, superintendent at Lakeshore Yacht and Country Club in Cicero, New York. "But, it was therapeutic for us as well."
A month after Griffin's death, Erin Engle filed paperwork with the state to start a non-profit foundation dedicated to helping other families affected by childhood cancer. By Dec. 4, Griffin's Guardians had won approval and was up and running.
"It happened way quicker than we thought," Erin said. "We were told it would take about six months, but it was approved in six weeks. Then we just went with it."
We wanted to do it to help other people. But, it was therapeutic for us as well."
Fundraisers throughout the year, including soccer and hockey tournaments, a head-shaving event, school fundraisers and the annual Gold Tie Gala have helped raise $1.25 million since 2014, which funds medical research conducted at the University of Michigan and helps families of children being treated at Upstate Golisano Children's Hospital in Syracuse.
"I had discussed it with Adam, and I told him I wanted to go big or go home," Erin said. "I wanted to make a difference, so since Day 1 we hit the ground running."
Money goes directly to affected families and can be used for travel expenses associated with trips to the hospital, car repairs, rent, mortgage or even something as simple as helping parents with their laundry.
A program within the foundation called Lighten Your Load provides families with laundry soap and supplies and quarters - everything parents need to to do laundry outside the home while their children are in the hospital.
It's one more service the foundation provides to help make things as easy as possible for affected families.
The foundation has won widespread support from throughout the Syracuse-area community for its work in helping families of sick children across 17 counties who are served by Upstate Golisano, including the backing of the area's biggest sports celebrity.
Since 2014, the foundation twice has received contributions from the Jim and Juli Boeheim Foundation, a non-profit organization started by Syracuse University basketball coach Jim Boeheim, himself a cancer survivor, and his wife that funds a variety of community programs in central New York.
"We didn't realize how amazing this community was until we needed them," Erin said. 'They are loyal and support local charities to help make our community stronger and better."
The community benefits in return.
Cancer doesn't just affect the child. It affects the entire family."
According to information provided by the foundation, Griffin's Guardians has disbursed nearly $13,000 to families in need - just in February.
Even the Engles' other children help keep the foundation moving.
Grace Engle, 15, was 9 when she lost her brother. Definitely old enough to know what was going on. She reminded her mother throughout her work with Griffin's Guardians that siblings go through loss and suffering, too, so the foundation started a program called Grace's Sibling Sunshine that raises money to buy gifts for siblings of sick children.
A variety of fundraisers help support the program, and Grace learns what the children's interests are and matches gifts to kids. The program started with selling handmade crafts when she was 9 to hosting events at Build-A-Bear.
Younger brother Everett, now 8, helps raise money through events like school fundraisers to support the EVERett Lasting Memory program that provides family photos to those supported by the foundation.
"Cancer doesn't just affect the child," Erin Engle said. "It affects the entire family."
The Engle's own children not only are a critical part of the foundation's work, they have helped their parents navigate through a period that no one wants to go through.
"I didn't want this to destroy their life. I didn't want their outlook on life just to be Griffin's death," Erin said.
"Grace made me a mother. Griffin made me believe in strength and bravery. Everett saved me. I knew I couldn't curl up in a ball after this. I had to take care of a 2-year-old who had lost his brother. He couldn't lose his mom and dad, too."
