We love a good origin story – the passionate seed of an idea that turns into something great. Better2gether is a young nonprofit in our area, but it has already made an impact on the lives of families facing unbearably tough days.
The story of Better2gether starts in 2016, when Stephanie Becker’s son Jack was diagnosed with stage 4 lymphoma of the kidneys. At the same time, the son of Stephanie’s friend Liz was diagnosed with an incurable, rare lung disease – so rare, there are fewer than 40 known cases in the world. While both boys were thrust into crisis with life-threatening illnesses, despite different diagnoses, they and their families were on the same path: navigating a medical journey and finding support along the way.
The two mothers found that when it came to pediatric cancer, organizations like ASK and Connor’s Heroes are well known and rooted in the community. But they asked themselves, besides those with cancer, what about other kids and their medical challenges?
And this is how the two of them came together to create Better2gether, vowing to support kids and their families who are navigating medically complex illnesses – those illnesses that don’t always show up with a quick Google search.
“[Liz and I] had this unique opportunity for a parallel journey,” said Becker, who serves as the executive director of Better2gether. “This highlighted that if your child has an illness that isn’t well known, there isn’t always non-medical support in Richmond. It’s shocking. How can there not be a support system with resources outside of the medical setting?”
Services to families facing complex medical illnesses
The doctors, nurses and medical support staff provide the medication, scans, diagnoses, prognoses and progress reports – but when the doctor leaves the room, who helps lift your spirits and keep your head high during those “off” hours?
Better2gether provides comfort, support and guidance to families, equipping them with the tools they need to care for their child outside of the hospital walls. It provides a sense of community during a time that can feel like total isolation.
Better2gether has a social worker who serves as a resource coordinator for the organization, connecting families with organizations who can support their needs, such as needing to install a wheel chair ramp, accessing Medicaid for their child or getting grants to cover equipment and supplies that aren’t covered by insurance.
Additionally, Better2gether and its volunteers help coordinate counseling and therapy sessions, including music therapy. There’s even a program called SMILE Buddies, where VCU Health medical students are paired up with children receiving care at the hospital.
The pandemic’s impact on high-risk families
But as you can imagine during a global health pandemic, facilitating these services to a high-risk population has its challenges.
“We are in somewhat of a unique situation because the kids we provide support to have compromised immune systems; they’re truly the most at risk,” said Becker. “They’ve had to quarantine in a way that none of us has truly experienced. They were also cut off from critical medical care and therapies, and some children were regressing when things shut down completely in the beginning.”
During that early shutdown, instead of going to the hospital, many families became de facto medical personnel and handled critical care, like infusions, from home. Some of these treatments required out-of-pocket expenses.
“About 25% of our families became financially insecure; it was a real struggle,” recalled Becker. “And more than 25% became food insecure. They couldn’t risk exposure, and they had a hard time getting food, so we changed what we do to help the new needs of our families.”
That pivot meant food drives, cleaning supply drives, virtual support groups and fun virtual classes for the kids – like cookie decorating or online art courses. Better2gether also hosted a Christmas-in-July-like event where they delivered new toys to kids’ homes. It also found a food partner with Seasonal Roots and held one-off fundraisers to help get more gas cards and grocery gift cards to its families.
“We’re still in the process of delivering virtual opportunities. These families aren’t going to be doing anything in person any time soon,” said Becker. “At least for the first half of 2021, we’re going to deliver critical resources and solutions to meet them where they are – virtually. And we’re continuing to look for community partners who can help.”
Better2gether is doing what it can to support its families, who are part of a population that will likely emerge from the COVID-19 pandemic last. This spring there will be a fundraiser golf tournament at The Highlands on May 13, and this fall, there will be a 5K. These fundraising efforts are just some of the ways Better2gether is looking to support its families. To date, the organization has served 62 children from 51 families.
“We’re 100% donor funded. We’re a small nonprofit out of the gate,” said Becker. “It’s important to recognize that while there are so many important childhood illnesses, kids that are being treated as ‘medically complex’ are being treated at much higher rates than just cancer cases. It’s important to understand the challenge ahead of us, and that there is a huge deficit in our community. We’re the only organization fulfilling this need.”
And as for Jack, one of the catalysts and motivating forces for starting Better2gether, well, he started a three-and-a-half-year protocol for his lymphoma, and he just celebrated his first year in remission.