Family Spotlight: Finding Hope and Connection

When Sky and their parent, KJ, arrived in the Richmond area in late 2024, they were carrying far more than moving boxes. 

Just weeks earlier, Sky had contracted COVID-19 and began experiencing symptoms that wouldn't go away. At the same time, the family was navigating the aftermath of Hurricane Helene in Asheville, North Carolina, before relocating to Virginia. What followed was a whirlwind of medical appointments, testing, and uncertainty. 

Thankfully, the family found support through The Children's Hospital of Richmond, where Sky began seeing multiple specialists. After months of evaluations, Sky was diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome), autonomic nervous system dysfunction, and several related conditions. As their symptoms worsened, Sky transitioned to homebound schooling. 

For KJ, life quickly became a balancing act. 

As a single parent, KJ balances the demands of caregiving alongside a deep commitment to their work in youth development and education. A graduate of Georgia Tech, KJ brings more than twenty-five years of experience across a variety of learning environments and over 18 years of teaching swimming skills to children of all ages. Through their swim instruction practice, Swim Gently, KJ uses adaptive, trauma-informed techniques to help swimmers—especially neurodivergent learners and children with diverse abilities—build confidence, independence, and safety in the water. KJ is also a professional face painter @FacePaintingAsheville and entrepreneur, bringing creativity and joy to community events while creating welcoming, inclusive experiences for families. 

Alongside their professional work, KJ coordinates Sky’s complex medical care, including appointments, therapies, medications, and daily support needs, navigating each day with careful planning and resilience. 

Each morning begins with preparing food and making sure Sky has what they need before they head to work. Throughout the day, KJ checks in remotely, arranges additional support when needed, and often spends their downtime communicating with doctors, picking up medications, or planning future care. Every day requires careful coordination between work responsibilities and Sky's medical needs. 

"We're surviving day-to-day," KJ shares. 

Because Sky spends so much time at home, pets have become an important source of comfort and companionship. Last fall, Sky welcomed a baby ball python into the family, and more recently, KJ adopted a pair of black sibling cats to serve as emotional support companions. A neighbor also gifted them an eastern milk snake, adding another unique member to the household. Caring for and spending time with the animals has brought moments of joy, connection, and routine to days that can otherwise feel isolating. While Sky enjoys the companionship of their pets, KJ laughs that they have fallen in love with them, too, and happily shares in their care. 

Because Sky spends much of their time at home and in bed, even small outings have become meaningful victories. 

"It's a really good day when Sky has the energy to leave the house. Sometimes after a doctor's visit we might go to Michaels or PetSmart, and to me, that's a big win." 

Like many families caring for a child with complex medical needs, the challenges extend beyond medical care. Financial pressures, social isolation, and navigating educational accommodations can feel overwhelming. As a single parent who also manages her own chronic health conditions, KJ worries about having enough energy to care for Sky while keeping up with the rising cost of living. 

Being new to Richmond has brought additional challenges. Sky has struggled to build local friendships, and KJ knows how difficult it can be to form connections when chronic illness keeps a child largely homebound. 

"How can you make friends when you never leave the house?" KJ asks. 

Amid these challenges, Better2gether has provided both practical support and a sense of community. 

"Meeting Jenn helped me feel less alone and more connected than I have since we moved to Richmond," KJ says. "What a breath of fresh air." 

Through Better2gether's Family Navigation program, the family was connected with an educational advocate who is helping them navigate the IEP process and secure the support Sky needs at school. After a difficult school year, KJ is hopeful that having the right accommodations in place will help Sky succeed academically while managing their disability. 

Better2gether also helped address another significant need: food security. 

"The cost of food has been such a burden," KJ explains. "Jenn arranged a food bank to bring food deliveries to our house, which has been golden. I'm so grateful for this extra help." 

One of the most meaningful moments came from attending a Better2gether parent meet-up, where KJ connected with another mother facing similar challenges. 

"I was delighted to meet another mama with similar struggles." 

For families navigating rare and complex medical journeys, those moments of understanding can be life-changing. 

Today, Sky and KJ continue taking life one day at a time. While the road ahead still holds challenges, they are moving forward with greater support, stronger connections, and renewed hope. 

At Better2gether, we are honored to walk alongside families like theirs—helping ensure that no parent has to navigate this journey alone.