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When your newborn is rushed to the NICU, your world changes in an instant. For Alexis Kaplan, that moment was just the beginning of an emotional and complex medical journey with her daughter, Gabby.
In this powerful episode of the Child Life On Call Podcast, Alexis shares her story—one that’s filled with curveballs, courage, and unwavering love. If you’re a parent navigating a rare or chronic illness with your child, Alexis’ story offers not just insight, but inspiration.
A Medical Mystery from Day One
Gabby was born with a spontaneous pneumothorax—a collapsed lung that required immediate intervention and a stay in the NICU. What followed were years of unexplained symptoms:
- Recurring high fevers
- Feeding difficulties and failure to thrive
- Constant ear infections, pneumonia, and asthma attacks
- A lack of response to standard vaccinations
Like many parents of children with rare conditions, Alexis became her daughter’s medical historian, advocate, and care coordinator. “The curveballs just kept coming,” she shared, describing milestone after milestone that brought more questions than answers.
Diagnoses That Changed Everything
After seeing multiple specialists and pushing for more testing, Gabby was eventually diagnosed with two rare and serious conditions:
- Primary Immunodeficiency (IgG subclass deficiency): Her body doesn’t produce enough antibodies to fight infections, requiring weekly subcutaneous immunoglobulin infusions.
- Collagenous Gastritis: A rare gastrointestinal disease affecting only a few hundred people worldwide. Gabby’s case was likely triggered by long-term medication use and inflammation.
Despite the challenges, Alexis and Gabby found strength in routine. Each week, they watch Grey’s Anatomy during Gabby’s infusion—transforming treatment time into bonding time.
The Power of Advocacy and Connection
Throughout their journey, Alexis leaned on digital communities, Facebook support groups, and her own research to stay informed. She emphasizes the importance of trusting your gut as a parent:
“Don’t be afraid to be doctor mom. When your child is facing something rare, you have to speak up.”
From asking for additional labs during a hospital stay to pushing for access to a medication that ultimately helped Gabby manage her gastritis, Alexis’ story is a reminder of how powerful a parent’s voice can be in the healthcare setting.
Skating Through Adversity
Today, Gabby isn’t just surviving—she’s thriving. She’s a competitive figure skater who recently won a national title. Most people watching her glide across the ice have no idea what she’s been through—or how fiercely she’s fought to be there.
“She’s incredible,” Alexis says. “I look at her and I think, how are you this strong?”
Support for Parents of Medically Complex Kids
If you’re parenting a child with chronic or rare health needs, Alexis has a few pieces of advice:
✅ Use your voice. Don’t be afraid to ask questions, advocate, and even challenge medical professionals when something doesn’t feel right.
✅ Seek specialized support. Therapists who understand chronic illness in children can be game-changing.
✅ Find your people. Online support groups can offer resources, reassurance, and answers to the questions your doctors can’t always answer.
Follow Gabby and Alexis
Want to follow Gabby’s skating journey or connect with Alexis as she begins sharing more about their experience?
📲 Follow Gabby on Instagram: @gkapskates
📲 Follow Alexis’ blog on Instagram: @keep_throwing_curveballs
Listen to the Full Episode
🎧 Podcast Episode: Alexis’ Story
For more stories like this, subscribe to the Child Life On Call Podcast and join a growing community of parents, providers, and advocates working to support kids through medical challenges.
