Approximately 8 percent of children in the United States between the ages of 5 and 17 are impacted by chronic conditions — many of which continue into adulthood. That number is rising, particularly in low-income communities. And with almost half of adults living with at least one chronic condition, kids can find their lives affected by illness even when they themselves don’t have them.
Chronic conditions can impact a person’s life — and the lives of family members and loved ones — in immense and unprecedented ways. That’s why organizations which can provide vital resources, support systems, and emotional empowerment are so important.
These three nonprofits are working to help kids affected by chronic conditions, as well as their parents and loved ones, get access to programs and services that cannot only help make their lives easier, but give them the opportunities they might not otherwise be able to reach for.
Walk with Sally
Walk with Sally was founded by Nick Arquette to offer support for children whose parents are living with cancer. Inspired by his own childhood experience of losing his mom to cancer, Nick wanted to make a difference for other kids facing that type of situation.
“My mother died of cancer when I was 16, and I watched her for five years of sickness going through all the ups and downs,” he recalls. “For years, I tried to be normal, while at the same time dealing with a very sick mom.”
Walk with Sally began as a class assignment to create a project that would serve the community. It grew from being run by Nick and a few friends, to a full-fledged organization that offers financial aid and several services to kids in need.
The program provides assistance for families when their loved one is ill, and continues to be a resource even after a child loses a parent. Some of the services the organization offers includes financial aid for living and funeral expenses, scholarships, mentoring, group activities, and support during the holiday season — when pain from loss can be especially hard.
“Seeing how we wrap our arms around the family is a privilege and an honor,” says Arquette. “We, in many cases, are watching the kids go from elementary school to college — that is a lifetime!”
Childhood friends Zander Lurie and Leah Bernthal founded CoachArt in honor of Lurie’s late father, a cardiac surgeon who saw the need for providing long-term care and support for pediatric patients. Dr. Arthur Lurie went by the nickname Art, and was known by many of the kids he worked with as “Coach Art.”
His namesake nonprofit brings arts and athletics to kids with chronic conditions who may not be able to go to school or otherwise participate in these activities. The organization matches a child and their family with a coach or mentor, who can teach the skill they want to learn — like basketball, cooking, painting, photography, yoga, and more. Siblings are also encouraged to participate.
“We believe that chronically ill children and their siblings need extra support and opportunities to improve a skill, uncover hidden talents and passions, and simply have fun,” says Ben Carlson, the organization’s public relations officer.
Since becoming an official nonprofit in 2001, CoachArt has made a memorable impact on many lives, including Alberto, who was left with paraplegia after a cancerous tumor damaged his spinal cord. Starting piano lessons with CoachArt at 9 years old, Alberto is now 15 and studying piano at the prestigious Colburn School. “Whatever activity you’re doing, never give up,” he says.
Volunteer coaches also get a lot out of the program. For Katie Cornell, who grew up with chronic asthma herself, the feelings and experiences kids in CoachArt go through hit close to home. Cornell says she was lucky enough to have supportive parents and teachers, and believes it’s important to help kids feel accepted. “Kids are our future,” she says. “The way we treat them and build them up today has such a big impact on what they can do to make the world a better place.”
The Young and Brave
Getting a difficult diagnosis at any age can leave you feeling helpless. It can feel even more devastating to a person and their family when it happens at a very young age. Matt Coulter and Nathaniel Curran founded The Young and Brave to give children and young adults facing cancer diagnoses somewhere to turn to for support.
The organization was founded in 2009, when a very close friend of Coulter and Curran’s was diagnosed with leukemia. She was just 24 years old and needed help raising funds for medical expenses.
“We were so alarmed with the lack of resources, we felt that we had to do our part,” says Coulter.
And while it began as a means to help a friend, it eventually grew into a platform that helps young adults and children who have been diagnosed with all forms of cancer. Family and friends can create a “Warrior” profile on the website in order to tell their loved one’s story and ask for donations. Visitors can click the link to donate. There are no hidden fees, and the family always has access to donated funds.
“When it comes down to those horrific moments, the things that matter become crystal clear,” says Coulter. “The Young and Brave Foundation just feels honored to do our part to leave this place a little better than we found it.”