Writers note: When my daughter, Avery Huffman, was diagnosed with DIPG (diffuse intrinsinc pontine glioma), a lethal form of brain cancer, on June 30th, 2015, it was days before the 2015 Elite 11. A few days later, I received an email from Erik Rees of the Jessie Rees Foundation and Brian Stumpf from Student Sports, inviting us to be a part of Courageous Kids at the Elite 11 last summer. We were unable to attend because Avery was undergoing radiation. I had seen NEGU hats at previous Elite 11’s, but never knew what it meant or stood for. Little did I know how much NEGU and the Jessie Rees Foundation would impact my family and Avery during her battle. Little did I know how much in common we would have with Erik and Jessie. During last year’s Elite 11, Avery received a message of hope and encouragement from the quarterbacks at the Elite 11, telling her to Never Ever Give Up. She vowed to return this summer. Unfortunately, DIPG took Avery’s life on February 16, 2016. This summer at the Elite 11, I was able to spend some time with the folks at the Jessie Rees Foundation, the Courageous Kids and their families and quarterbacks and saw, again, the impact they had on these brave kids fighting cancer. And we fulfilled Avery’s vow that we would be there.
When Clemson quarterback DeShaun Watson threw a pass during his All-American 2015 season, he did it with a flick of the wrist.
On that wrist was a bracelet with the word NEGU imprinted on it.
Never Ever Give Up.
Words inspired by Jessie Rees during her courageous battle against DIPG, a lethal form of brain cancer that strikes nearly 200 children in the United States each year.
Driving home from the hospital following chemotherapy treatment, Jessie, having seen numerous children at the CHOC, where she was treated, was thinking about the look of fear and loneliness each fighter carried.
“Jess asked (her mother) Stacey and I ‘how can we help them?,” said her father, Erik Rees, who founded the Jessie Rees Foundation.
So the Rees family found a way to bring smiles and laughter, and most importantly, hope, to the patients. JoyJars were created. Jessie’s middle name Joy was the inspiration.
Jessie’s mission and one simple goal and now Jessie’s Rees Foundation’s mission statement: “Encourage every kid fighting cancer to Never Ever Give Up”.
They did that via JoyJars, jars packed with toys, gifts and games, and would deliver them to patients. Eventually, JRF would add other encouragements for the entire courageous family. Jessie stuffed and delivered over 3,000 in her 10 month and 2 day fight with DIPG.
In 2013, a year after Jessie lost her fight against DIPG, Erik Rees, Team NEGU and the Jessie Rees Foundation traveled to the Elite 11 Finals on the NIKE Campus in Beaverton.
Erik Rees grew up in Beaverton, the trip to the NIKE Campus a homecoming of sorts.
And a partnership that has grown throughout the past four summers started in July of 2013.
“Jordan Palmer, one of our Elite 11 coaches and a former NFL quarterback, had become involved with NEGU and he brought the concept to us in 2013,” said Brian Stumpf, the President of Football events for Student Sports and organizer of the Elite 11. “One component we’ve always been passionate about is making sure the quarterbacks understand the power of the jersey and their prominence on their team, at their school and in their community- the burden of influence.”
Rees said Palmer were crucial in bringing the idea to him.
“Jordan is one of our board members and he came to us and said ‘Erik, I have this activation that I do each year. Trent Dilfer and I want to teach these kids more about who they are off the field, outside of their skills on the field,” said Rees. “So that summer (2013), we were honored to bring Courageous Kids to the Elite 11. We always envisioned the Courageous 11 meeting the Elite 11 and we made that happen.”
Selected to participate in the Elite 11 Finals that summer was a four-star quarterback from Gainesville (Ga.), Deshaun Watson, Scout’s No. 3 quarterback in that class.
Watson’s mother, Deann, was a cancer survivor, so meeting children with cancer impacted him on a greater level.
Meeting one of the Courageous Kids sent Watson on a mission his senior year, one that he recognizes each game he plays for the Tigers.
“One of the greatest relationships we have was started when we brought a kid to meet Deshaun, who was an Elite 11 quarterback that first year,” said Rees. “Then he goes home and he dedicates his senior year to these kids and now he’s at Clemson doing the same thing. He was back at Elite 11 as a coach and sharing our message constantly. He takes it on himself. You have a choice every day to use your life for good. And Deshaun has done that.”
When Stumpf, Palmer and Rees brought NEGU and Elite 11 together in 2013, the goal was to emphasize what kind of impact the quarterbacks could have using their platforms in positive ways.
“Introducing NEGU to the quarterbacks in 2013 was all about helping them understand how they can impact their community by being involved and being part of a solution,” said Stumpf. “In the case of NEGU, we’ve had several quarterbacks that have come through Elite 11 who’s lives had already been profoundly affected by loved ones who’ve dealt with cancer, most notably Deshaun and Jake Zembiec whose mothers are both cancer survivors. I think in two regards it’s been a huge add and possibly the most important thing we do with the quarterbacks during the week.”
Rees and lead Elite 11 quarterback Trent Dilfer both suffered the loss of a child, Rees losing Jessie in 2012 and Dilfer losing his son, Trevin in 2003 to heart disease.
“Trent and I have a kindred spirit because he also lost a child and he loves the opportunity to teach these kids how to use their platform for good,” said Rees. “We wanted to cultivate these relationships that start here.”
Stumpf travels the country each year with The Opening Regionals and the Elite 11 Regionals, and comes across the best athletes on a weekly basis.
He knows the impact that professional and collegiate athletes have on those players, serving as coaches or counselors at the various events.
So Stumpf was eager to bring NEGU to Elite 11 to tell the high school quarterbacks that they too could have an impact on people, even at a young age.
“They see firsthand how they, as prominent athletes, can lift the spirits and inspire those around them who look up to them,” said Stumpf. “The smiles they put on these kid’s faces as they interact with them is something that leaves an indelible mark on them. We’ve seen so many of these quarterbacks continue to work with NEGU and local kids when they return to their hometowns.”
But he also sees the quarterbacks learning too from the kids they come across.
“They learn from the courageous kids – kids who are fighting through something much more dire than facing a blitz on 3rd and 7 or trying to decide which college they want to attend amongst 20+ scholarship offers with media and fans telling them how great they are every day. They get tremendous perspective when they see how Super Cade is taking on the fight of his life each day and how he remains so positive in the face of tremendous adversity and is an inspiration to so many other kids in the same situation.”
“Super Cade” is Cade Spinello, a 10-year old boy from Orange County, who is battling a brain tumor known as Pilocytic Astrocytoma. Cade also suffered a massive stroke. He has right-side weakness and he is legally blind.
Cade was a “chemo buddy” of Jessie Rees during her treatment five years ago and the families struck up a friendship that led to Cade being named a Junior Ambassador for the Jessie Rees Foundation.
Through NEGU Adventures and other activities, Cade has been able to go through his own fight with days of hope and fun.
Notably, Cade visited UCLA officially last January and, after being named a five-star by Scout, committed to UCLA.
“Cade is a special guy to us,” said Rees. “He and Jess went to chemo together. We’ve known him for over five years. They used to call them chemo buddies. He’s one of our junior ambassadors. He’s the highlight of the Elite 11. He loves sports, so the opportunity to facilitate that is huge. When Scout named him a 5-star athlete, the joy, to be able to feel ‘that’s me’, that’s empowering. To come up and talk to the atheletes, to share his story, it always inspires us. He’s had a stroke and has limitations and he’s legally blind. But to watch him throw the football, you wouldn’t think that. Everyone gets inspired by him.
Cade struck up a friendship with Watson and the two remain in contact. Other quarterbacks have become close to Cade and his family too, including former Elite 11 quarterback and current Stanford quarterback K.J. Costello, who had Cade join him as an honorary captain at a game at Santa Margarita (Calif.) HS.
And this year, another Orange County quarterback, Jack Sears from San Clemente (Calif.), was paired with Cade at the Elite 11. They become instant buddies.
Cade’s father, Michael, said what NEGU has done for Cade and their family has been more than he could describe.
“I could not imagine this road without the foundation,” said Michael Spinello. “Jessie was diagnosed two months after Cade. We have been walking this road with them. We watched NEGU become what it is. And we have been fortunate to be involved. Everything we look at in this entire journey, they’ve been right beside us. Cade has had a team of cheerleaders and encouragement right from the beginning. There are so many kids who don’t have it, that are just walking it alone. I couldn’t imagine what it would be like walking this alone.”
And that goes back to what Erik Rees saw with Jessie and what inspired him to carry on her wish.
“When she was going through her battle, she said to me, ‘daddy, I feel lonely and limited.’ And other kids fighting through this feel alone too. She used love to help these kids not feel alone. They didn’t feel limited anymore. They felt empowered. It’s a powerful thing,” said Rees.
Erik Merklin’s daughter, Leah, is a six-year old from Oregon who has also been battling DIPG.
She was at the Elite 11 this year as a Courageous Kid, paired with Michigan quarterback commit Dylan McCaffrey.
McCaffrey slowly walked with Leah during the drills, hand in hand, while Leah played along with the other courageous kids.
“I didn’t know what to expect,” said Merklin. “You think football players, you get cocky dudes, even at a high school age. But this wasn’t like it at all. (Dylan) was super in to talking to Leah, holding her hand. It was good to see how nice and caring they are.”
After the drills and activities were done, each Courageous Kid was given a JoyJar made by the quarterbacks the night before. That was a new addition to their time in Beaverton.
“This was the first year we had the athletes stuff the Joy Jars, and that was a cool addition for us,” said Cheryl Ingraham, Regional Coordinator for the Jessie Rees Foundation. “But the coolest part is to have them think about others when they stuff those JoyJars and then hand them off. It’s not just handing them a toy, but making a difference. To share Jessie’s motto, Never Ever Give Up. This will carry them through their difficult journey. It’s an amazing opportunity for the kids and the athletes. The athletes take away - there is more than football.”
The JoyJars were the biggest hit in Beaverton and for Courageous Kids, they get them as a part of the Year of Joy program through the Jessie Rees Foundation.
“Leah looks forward to the JoyJars and its always an exciting event for her,” said Erik Merklin. “She and her sister both take turns opening it and looking inside. They get the JoyJars and it’s just great. We definitely dwell on the positive. With her little sister, that’s all you can do. It makes me happy to see her happy. That’s my whole goal.”
Rees said that what people did for Jessie, to take away the thoughts about cancer, moved him.
“People would go out of their way to make her not think about her cancer. It was incredible,” said Rees. “We can’t cure cancer. But we can cure bad days. As a parent, you try to do everything you can to help your kid smile and feel empowered, even though cancer is stripping them down. As a dad, you still want them to feel successful. We try to do everything we can to cure those bad days and bring smiles. And now that we’ve helped over 125,000 kids over the world, it’s working. Every one of those smiles reminds me of my daughter’s smile. Jess started a little ripple and now it’s a big ripple reaching 50 states and 30 countries.”
It is not just the Courageous Kids who are impacted, though. It’s their brothers and sisters, their moms and dads, grandparents and other family members.
They too are in the fight with the Courageous Kid.
“Obviously cancer impacts the whole family,” said Rees. “When Jess was making her JoyJars, she wasn’t thinking of the families because she was focused on her peers fighting. After she lost her fight, our family decided we have to help the families too. I had checked in with my oldest daughter during Jess’ fight. I asked her how she was doing and she said ‘I’m jealous, every day in here is like her birthday.’ Knowing that on the inside, why let another family experience that? That’s why we have the Super Sibs. We want them to feel empowered too. The Family Fun Packs, they have puzzles, popcorn, fun things that draw the family together while cancer rips it apart.”
The impact that Courageous Kids and JRF has on families is strong.
Ingraham said seeing the parents themselves light up when their children meet athletes tells her the impact is deep.
“It happens here and in the hospital too when we go with pro athletes,” said Ingraham. “Parents are standing back watching and then they start to cry. The minute they see their child smile, they have this deep sigh and just say, ‘this is so cool.’ They see so much pain from their child, to see that smile is such a highlight for them.”
Watson has left a lasting legacy on the Jessie Rees Foundation and all associated with it, as a personal favorite.
“Deshaun is definitely up there as one of our favorites,” said Ingraham. “I’ve never seen him act cocky. The coaches at Clemson say the same thing. He has a good heart, he works hard and he doesn’t take anything for granted.”
Other quarterbacks like Kyle Allen and Blake Barnett have also felt the impact.
“Blake got it from the start and we’ll take a courageous kids to Alabama this year. Kyle Allen, he has a great heart too and he got it from the start too,” said Rees. “They didn’t feel entitled. They loved to be here.”
More than anything, Rees said they wanted to bring hope. Hope to the Courageous Kids. Hope to their families. He knows the importance of hope in a fight against cancer.
“Jessie’s motto, Never Ever Give Up, is a message of hope,” said Rees. “You can go without food and water for a few days. But you can’t go a second without hope. And Jessie’s motto was to bring hope.”
To learn more about the Jessie Rees Foundation, visit www.negu.org.