Life doesn’t always go according to plan, as anyone who’s ever faced a chronic illness before will tell you. But for 15-year-old Noah Weber, who was diagnosed with Crohn’s disease just a few years ago, that doesn’t mean you give up the fight. Recently, the teen from Westchester, New York took his difficult diagnosis and turned it around in an amazing way, connecting with a famous basketball star who shares the same illness, and forming a charity to help educate and fight the disease.
Weber was just over 11 years old when he first started showing signs of Crohn’s disease, an autoimmune disease that is characterized by chronic inflammation of the gastrointestinal tract.
“We noticed he stopped growing and gaining weight,” his mom, Pamela, tells Babble. “His foot size was not changing. There was no rapid movement to the next size sneaker as we were used to.”
Pamela says that Noah also showed signs of extreme fatigue, which understandably concerned her.
“He did not have the energy you would expect from an 11-year-old boy and he could not keep up with his friends on the court or field,” she explains.
After undergoing testing by doctors at Mount Sinai Kravis Children’s Hospital in Manhattan, Noah was officially diagnosed with Crohn’s disease in April of 2015. The diagnosis was a relief, because it meant that Noah now could get treatment and begin to feel better — but it also opened up a whole new world of testing medications, surgeries, switching doctors, missing events, and a whole bunch of added stress for the family.
Still, Noah says he decided right away that none of that would stop him from living his best life and doing great things, and in the summer of 2016, the lifelong sports fanatic was watching the Olympics when he caught an interview that would prove fateful. In it, Olympic swimmer Kathleen Baker opened up about her struggle with Crohn’s disease, and publicly thanked the doctors who helped her cope.
Noah immediately realized that if an Olympic athlete could live a full life with Crohn’s, then he could, too.
Soon after, he searched for other athletes who had Crohn’s, and came across one name that stood out to him from all the rest: Larry Nance Jr., a 6’7” NBA basketball star who plays for the Cleveland Cavaliers.
Inspired by Nance’s story (who was diagnosed young too, at just 16 years old), Noah sent the athlete an Instagram message. It wasn’t long before he heard back and connected with him on the phone.
The rest, as they say, is history.
Not only did the two connect in ways that only people who battle similar chronic illnesses can, but they also became fast friends, sharing a love of basketball and video games (according to Noah, the two even played Fortnite together the last time they hung out). Pamela says that Noah inspired Nance with his resilience and young spirit, while Nance offered Noah a kind of hope he hadn’t had before.
Then came Noah’s incredible idea: the dynamic duo would start a charitable organization to raise money for Crohn’s and also offer hope to other young kids who are newly diagnosed with the disease. In January of 2017, Athletes vs. Crohn’s was born.
“Noah came up with the idea of Athletes vs. Crohn’s and Colitis on his own,” explains Pamela. “He literally walked into our room and said ‘I have an idea for an organization.’ An athlete himself, he was relieved and inspired to see that there were professional athletes who suffered from the same disease. Once he connected with Larry Nance Jr., he decided he wanted to do something for other kids.”
What an amazing kid, right?
Athlete’s vs. Crohn’s has been going strong since its inception, with both Noah and Nance pouring their hearts and resources into it. Through their combined efforts, the organization has since raised a whopping $80,000 (and counting) to raise awareness about the disease and support medical centers that care for Crohn’s patients.
“The organization has been working hard to raise awareness of the disease, to inspire others living with it and to contribute to research and a cure,” says Pamela. “Awareness and funds have been raised through a basketball tournament, smaller fundraisers such as car washes, bake sales and social media. No effort is too small.”
But for Noah, the highlight of the whole experience has truly been his friendship with Nance.
“Every time we see him is a highlight,” says Noah, who adds that the two have even played basketball together a few times, which was mind-blowing for the 15-year-old. “Being able to play with Larry and all the people that showed up was amazing.”
“Noah and Larry connected from the moment they met,” Pamela says. “I guess I would call it a sort of big brother/little brother relationship. They share a bond that only others living with IBD [Crohn’s] can relate to.”
Noah and Larry continue to work together to grow their organization, and inspire other young people living with Crohn’s. Noah says this component of the organization is really important to him, and tells Babble that he wants kids who are living with Crohn’s and other chronic illnesses to “stay positive, because there are many treatments for different diseases and you will get better.” Down the road, Noah assures, they will be able to lead normal lives and engage in many of the same activities they used to, as soon as they find a treatment plan that works for them.
Noah should know — after finally finding the right medicine and undergoing a recent surgery, Pamela says that Noah’s health is stable right now, and his long-term prognosis is excellent.
When Noah reflects on the experience, he says that Crohn’s has made him stronger than he knew he ever could be.
“Living with a chronic illness has taught me to be resilient and to not give up,” Noah says. “It has made me into a stronger person because things have not come as easy to me as they do to other kids. I have had to work harder, but I have learned not to let it hold me back.”
But no one seems to inspire Noah more than his friend (and now co-worker!), Nance. Noah excitedly shared this little nugget of wisdom that his favorite basketball player passed along to him:
“Larry says, ‘Whatever your goals are, whatever your passion is, you follow it,'” says Noah. “‘You let your mind lead and let your body follow. Don’t let Crohn’s hold you back.’”
You tell ’em!
Here’s wishing Noah (and all the warrior kids out there batting chronic illnesses) the hope, health, and most importantly, the amazing support they deserve.