Grace Engle, left, and brother Griffin Engle dance in their yard in June of 2014, just under a year after Griffin was diagnosed with Glioblastoma Multiform, a rare form of brain cancer. Griffin passed away in September of 2014. (Photo by Erin Engle)
By Sarah Hall
When Griffin Engle lost his battle with cancer, his parents, Erin and Adam Engle of Cicero, lost their middle child, with his bright smile, his passion for sports and his zest for life.
But his sister Grace lost her best friend.
“She and Griff were two years apart,” Erin said. “She had to learn to live her life without her best bud, without her sidekick constantly there.”
Griffin was diagnosed with Glioblastoma Multiform shortly after his sixth birthday, Aug. 18, 2013. He endured surgery, chemotherapy and radiation, lost much of the use of the right side of his body, went through grueling hours of physical and occupational therapy — and still maintained his bright personality, his optimism and his infectious laugh.
Ultimately, however, the medical intervention wasn’t enough. Griffin passed away at home in hospice care on Sept. 12, 2014.
In December of that year, in honor of their son and in order to raise awareness about the lack of funding for pediatric cancer, the Engles started Griffin’s Guardians, a nonprofit that has since partnered with St. Baldrick’s, the world’s largest private pediatric cancer research foundation, to create a research grant in Griffin’s honor.
Griffin’s Guardians has also helped families fighting pediatric cancer closer to home. This past November, the nonprofit began working with a pediatric social worker at Upstate Golisano Children’s Hospital to provide assistance to families undergoing treatment there for pediatric cancer.
“What we can do is provide financial help, or if someone’s in a good position, we can offer a local memory,” Erin said. Memories have included a trip to Billy Beez at Destiny USA and gift cards to be spent during a trip to Disney World.
Erin and Grace were lying in bed together discussing the first family the program was to help when Grace came up with the idea to help siblings.
“We were looking for something specific for this young man who’s sick with cancer, and she goes, ‘Does he have a brother or a sister?’ And I said, ‘Well I think he has a brother, but I don’t know.’ I literally shrugged her off,” Erin said. “And [Grace said], ‘Because they’re going through a hard time too.’ And I immediately stopped and said, ‘You’re absolutely right. What are we going to do about it?’”
So the Engles started brainstorming. They reached out to the family and learned the brother was into sharks, and Erin and Grace went shopping and made sure to include something for the brother with the package for the family. Adam and Erin delivered the package to the family.
“The look on that little boy’s face — he jumped up and down on the couch and was like, ‘This is for me?’” Erin said. “Oh my gosh, he was so happy. And then we went back and told Grace, and we said, ‘This is something that needs to happen. These siblings need to know that they’re brave and strong too.’”
‘You are my sunshine’
The Engles decided to name the program Grace’s Sibling Sunshine, because they often sang the song “You Are My Sunshine” to each other. A portion of the $500 for each family would be allocated to gifts for siblings to ensure that their sacrifices and traumas were recognized, as well.
The program is funded in part by crafts and jewelry made by Grace and a number of her friends, as well as their family members, and sold at Griffin’s Guardians events, as well as local stores like the Hairtique Spa in Skaneateles. Grace’s goodies feature the Griffin’s Guardians logo and often include inspirational words or phrases. They include painted stones, duct tape pens, beaded bracelets, coasters, earrings, bookmarks, note cards, sticky notes and more.
“It’s neat because it’s the young kids doing it, but their parents also help,” Erin said. “[For example], we have one girl who does the beaded bracelets, and she and her grandma do it together. It’s their thing to do.”
If craft-making is a family affair, so is using the proceeds to help families.
“Sometimes we contract it out so other kids that make crafts, we let them and their moms go shopping so they can also see, this is where you’re hard work is going,” Erin said. “You’re making these things, you’re selling them and you’re going to bring smiles to this sibling.”
And these siblings need all the smiles they can get. Often, they get just as caught up in the ordeal of treatment as their parents, especially if they’re old enough to understand what’s going on, as Grace was.
“I remember when we told her that [Griffin] had cancer and that he had to have surgery. When we told Griff, he was like, ‘Okay.’ He didn’t know what that meant,” Erin said. “But when we told Grace, her questions were, ‘Can he die?’ ‘Will he be the same Griffin after surgery?’ I remember we were thinking, ‘Oh my gosh, she gets it.’”
While the Engles’ youngest child, Everett, who was not yet 2 when Griffin was diagnosed, recognized that there were disruptions in his world — his parents weren’t around as much, and he spent a lot of time at the neighbor’s — it’s only now that he has started to grasp what happened to his older brother, while Grace works to make something of a legacy for him.
“I think especially when it’s an older sibling, they carry a lot of the burden,” Erin said. “I think even now she’s still [carrying that burden] for us.”
The Gold Tie Gala
According to Grace, now 11, having other people recognize that siblings are hurting, too, helps ease that burden.
“It makes you feel like you’re important,” she said. “The siblings are going through a hard time, too.”
That’s why, for the future, she hopes to see more funding go towards the siblings in the families Griffin’s Guardians helps.
“We give up to $500 financially. We’ve done car payments, rent, National Grid, medical equipment,” Erin said. “I have one family that, when he gets in the hospital I call up the Kinney Drugs at Upstate, and I pay for his prescriptions every time he’s in there so they don’t have to worry about it. So yes, that’s a bigger chunk. Siblings, they get between $25 and $30 per sibling.”
For Grace, that’s not enough.
“I just want to get a little higher,” she said. “Once we get more money, I want more of it to go to the brothers and sisters.”
The Engles hope their big annual fundraiser, the Gold Tie Gala, will help in that regard. Last year’s inaugural event, held in September to coincide with Childhood Cancer Awareness Month, raised $45,000 for the nonprofit.
This year’s gala will take place Friday, Sept. 9, in the Grand Ballroom at the former Hotel Syracuse. Erin said she and her husband were reluctant to move from last year’s location at the Lake Shore Yacht and Country Club in Cicero, but ultimately the size forced them to make the decision.
“It was like 220 people, and we fit everybody in, and we knew a lot of people didn’t get tickets,” she said. “So we said, ‘Okay, let’s try Hotel Syracuse.’”
As it turned out, it was the right move; the 400-ticket event sold out within three hours.
“I don’t know if we’ll ever go bigger,” Erin said. “We like that personal, that comfortable [level of] intimacy. And [we don’t want to] have it be commercialized. But we’ll see. That’s the thing; it’s about reaching more people. But yeah, it’s pretty cool. And we’re super excited.”
Grace will be in attendance at this year’s gala, displaying Grace’s Sibling Sunshine’s wares. While the items won’t be for sale, the Engles hope to raise awareness about the program and possibly attract a sponsor.
“Their crafts don’t solely fund it,” Erin said, “so it would be fantastic to get a sponsor or a grant to help with that.”
Though this has been the first year for Grace’s Sibling Sunshine, the Engles agree that it’s an unqualified success.
“It’s neat because each gift is personal to that sibling,” Erin said. “It’s not like she’s just going out and picking things that she likes.”
She thinks Griffin would be proud of what his sister has done in his memory.
“He was one of those kids that [was] very kind, very sensitive to other people’s feelings,” she said. “We were lucky to have him.”
Erin said it’s been a little rough with Grace and Everett; the seven-year age gap means they’re not as close as Grace and Griffin were, and Grace has had to adjust to having a much different relationship with her youngest sibling than the one she had with Griffin.
“He’s not as good at tango [as Griffin was],” she said. “It’s not as easy for a 4-year-old to try to dip me.”
But Grace does hope her efforts will inspire Everett to get involved.
“He sees us making the crafts and he goes shopping with us and he knows [the gifts] go to a sibling of a kid with cancer,” she said. “I think he’ll start making the crafts soon.”
Erin said she and her husband are incredibly proud of their daughter for looking out for kids like her, brothers and sisters who lived in the shadow of a sibling fighting an incredibly tough battle.
“We call them the unsung heroes, the siblings,” Erin said. “[They] were holding down the fort for us, keeping everybody in line if Mommy and Daddy were gone. They’re heroes too that don’t get a lot of recognition.”
Sarah Hall is the editor of the Eagle Star-Review and the Baldwinsville Messenger. The 2012 winner of the Syracuse Press Club's Selwyn Kershaw Professional Standards Award, she has been with Eagle Newspapers since 2006. She is a Liverpool native.