Photo: Noah with Lisa Diskin
As loudspeaker announcements and the muted hubbub of teachers and students trickling past sounded in the background, Lisa Diskin took our phone call. She always makes time for St. Jude Children’s Research Hospital.
The Fredericksburg, Virginia, elementary school bookkeeper walked as she talked about how becoming a Tri Delta at the University of Toledo in 1984 had given her the sisterhood she had always wanted.
“It became, not my identity, but I think it was probably what I had always been searching for,” Diskin said. “You know, a group of like-minded women.”
Sisters for life.
No matter where her first husband was stationed, she sought out an alumnae chapter of her sorority. But when Diskin moved with her family to Fredericksburg in 2004, she realized she was a long drive from the closest chapter in Richmond. So Diskin did what Diskin does: She made things happen. She gathered a group of local Tri Delta sisters and co-founded the Tri Delta Fredericksburg Alumnae Chapter with Heather Cox in 2005, becoming its first president.
In 2006, the group started a scrapbooking fundraiser for St. Jude called Crop for a Cure — “like cropping photos for a scrapbook” — that became more successful than Diskin could have ever imagined. Crop for a Cure has raised more than $580,000 for St. Jude.
Ask her why she does it, and she’ll tell you about Noah.
In November 2013, Diskin and her Tri Delta alumnae sisters volunteered to help put on the St. Jude Walk/Run Fredericksburg. Diskin served as the walk chairperson, and she met a St. Jude family whose daughter, Ellie, had been named the Grand Marshal of the event. Over her coat, Ellie wore a pink T-shirt that read, “I am Ellie. Princess Strong.”
Ellie’s mom, Carly, had crocheted a cap to keep the 2-year-old warm. To give it a little pizzazz, she’d added a sparkling crown. Ellie was beaming.
Too weak by then to walk by herself, Ellie sat in her stroller. Her older brother, Noah, stood by protectively, as attuned to Ellie’s needs as her parents.
Dozens of Ellie’s supporters wore pink Princess Strong T-shirts.
“Even though it was a brief, fleeting moment, it was one of those things that you’ll never forget,” Diskin said. “In part because Ellie brought so many people together in her short life and didn’t even realize that. How could she?”
Ellie had become a St. Jude patient in early 2013 after undergoing surgery to remove a pineoblastoma brain tumor at a hospital near her home. At St. Jude, she received chemotherapy, which shrank the remaining tumor until it was undetectable. But by that fall, the cancer had aggressively returned, and her parents knew they were losing her.
Big brother Noah was 5 years old, and he had wanted to say a few words to the crowd about his sister and St. Jude.
But when the time came and the event emcee brought him forward, he stood there silent. His eyes filled with tears. He could not say a word.
His mom gently led him away.
“There is something about that child,” Diskin thought. “I don’t know what it is, but he will grow up to do something special.”
Ellie died less than one month later, on Dec. 22, 2013.
The biggest feel-good event
When Diskin learned from Carly that Noah wanted to start fundraising for St. Jude in Ellie’s memory, she invited him to team up with her for the Crop for a Cure event.
“I’m so loud and he was so quiet that I thought we could make a great team,” Diskin said.
Diskin and her Tri Delta sisters had made Crop for a Cure successful by providing scrapbookers with not only the space and time to craft to their hearts’ content, but also special extras, such as quality name badges nice enough for a keepsake, catered food and what Diskin referred to as “a high level of attention and love.” Her partner of nearly 14 years has become a de facto member of the group, providing tremendous support.
“At its core, it is a bona fide fundraiser for St. Jude. The other way that I look at it is it is a party, inside of a fundraiser, inside of the biggest feel-good event of the entire year.”
Diskin and Noah created a St. Jude fundraising page. Diskin explained the importance of a fundraising hook and asked Noah for ideas about what they could do to drum up donations.
“I think the first year Noah dyed his hair green,” Carly said. “(Diskin) was all for whatever he came up with. Or whatever we suggested, she was like, ‘I’ll make that happen.’ She just has that ability. And I think for Noah, who was extremely shy as a little kid, she made a confidence in him and just encouraged him to just do all the crazy things and be willing to try it.”
One year, they raised donations by promising to have a bucket of slime poured on them for hitting their goal. Another year, they promised to eat gross-out food. When they exceeded their stretch goal, they each ate a mealworm. Noah had his with a tomato, while Lisa ate her mealworm wrapped in liver.
“The bile rises in my throat when I think about it,” Diskin said, “and I ate the whole thing. I thought I was going to throw up. But we probably raised $25,000 that year.”
She would do anything for St. Jude — and to make Noah smile.
“It definitely felt special to have someone, especially a grown up when you’re 8 years old, who just appreciates what you’re doing,” said Noah, who is 15 now.
Diskin and Noah used the Crop for a Cure event floor as their theater, adding last-minute challenges and urging people to keep donating.
“I mean, the money that woman raises is crazy,” Carly said. “With her smile and her energy, and she just can talk and talk and talk until people just want to hand her money. And it’s amazing to watch it happen.
“I have watched her sell brownies for hundreds of dollars.”
Forged by fire
Material things don’t matter to Diskin.
“Stuff is just sort of noise to me,” Diskin said. “It’s around, and I can hear it, but it just doesn’t draw me, and it’s because of that fire when I was a little girl.”
When Diskin was 8 years old, electricity sparked from the antenna on her childhood home in Oregon, Ohio. The spark traveled down into the attic, where firefighters speculate it smoldered before finding an opening to the main part of the house through a hole in Diskin’s bedroom closet.
The fire engulfed her bedroom, and later, she stood outside and watched a firefighter bust her window and throw her toys, dolls, books and clothes—the things that had formed her sense of identity—out the window. All ruined.
No one was hurt, thankfully, and “the only thing that burned beyond recognition was my bedroom,” said Diskin.
Within this story are the central tenants of the world according to Diskin:
Life can change in an instant.
Things don’t matter, but people do.
Children’s emotions are as deep and profound as those of adults.
“The fire changed who I was,” said Diskin. “It changed the trajectory of my life and who I would become.”
All the pieces fit
The fire that ripped through Noah’s life – the cancer that took Ellie — changed who he was, too.
“The outcome of that sickness was definitely not what we would have preferred,” Noah said, “but just seeing the effects of what went on after just feels amazing what God can do with that sort of stuff. It’s important to talk about those sorts of things and those stories.”
In addition to supporting St. Jude through his work with Diskin, Noah and his family help lead an effort to provide aid to people experiencing poverty in Appalachia. All in Ellie’s name.
He’s not the shy kid he used to be. He uses his voice to help others — and he has fun doing it.
Life should be joyous. No one understood that better than Ellie.
St. Jude was a blessing, Carly said — giving them extra time with Ellie and moving pediatric cancer research forward. Lisa and Tri Delta are blessings, too.
“Our youngest daughter’s name is Stori, just because it’s awesome how events like Ellie’s life and everything in the past have led us to the people we’ve met, and the things we’ve gone on to do,” said Carly of her youngest daughter, who was born four years after Ellie’s death.
Stories connect people.
The Tri Delta Fredericksburg Alumnae Chapter decided the 2023 Crop for a Cure event, which was held in August, would be its last. The break forced by the pandemic had affected the event’s momentum. Now they’re pondering a new fundraiser for St. Jude. Maybe Noah has some ideas. He’s an endless source of inspiration.
“I don’t think anything happens in a vacuum,” Diskin said. “I think everything happens for a reason.”
That reason becomes the story of your life.