Gillette Children’s is one of 170 local Children’s Miracle Network (CMN) Hospitals to name a “Champion” in each of their communities. These champions serve as the face for children treated at their local children’s hospital and as advocates for the charitable needs of hospitals throughout North America.
This year, Gillette is excited to announce ZaLayaa Jahzara Wandrick as our 2024 CMN Hospitals Champion. ZaLayaa Jahzara is a wise-beyond-her-years 11-year-old who brings her creativity to every project – including the 2023 commemorative sticker for Gillette’s Walk & Roll event! She’s never afraid to try new things, despite living with multiple medical issues that impact her life daily.
A Medical Journey That Begins with ZaLayaa
ZaLayaa Jahzara approaches the world with an abundance of curiosity, courage to try things new to her, creativity, and a general zest for life. She has also had to deal with multiple sensory and complex medical conditions that impact her life every day.
Within hours of her birth, ZaLayaa Jahzara turned a worrying shade of blue – signaling the first in a series of challenges that have made her life far from typical. She has experienced severe allergies to chronic pain, seizures, auditory functioning disorder, gross and fine-motor delays, hypermobility syndrome, reverse reactions to medications, severe asthma, and sensory processing disorders. For ZaLayaa Jahzara, this means that ordinary activities most children take for granted were full of risks. A simple day out could result in weeks – sometimes months – of illness, her body unable to withstand exposure to common environmental factors. Still, the underlying cause of these issues remains a mystery.
“ZaLayaa Jahzara’s seen plenty of doctors in her life. It’s not like we aren't curious or actively trying to find answers,” her mother, Jazzalette, says. “We heard a lot of different theories and tried numerous treatments. Some were helpful. Some were not. After bouncing around for a while, we finally made it to Gillette and that made a world of difference.”
Searching for Answers
The aphorism, “When you hear hoofbeats, think horses, not zebras,” is commonly taught in medical school. The meaning being that before pursuing outlandish scenarios, one should usually start with those that are most likely, first.
The only problem with that theory is that every once and a while, a zebra shows up.
“ZaLayaa Jahzara is a zebra,” Jazzalette says. “What’s always been difficult is that she presents as completely healthy. We went through many rounds of genetic and other types of testing and got very few answers. The potential diagnoses suggested were always incredibly rare, obscure, or something no one could agree upon.”
Arriving at Gillette: A Person First
To say that the Wandricks were a bit frustrated by the time they arrived at Gillette would be accurate, but they also say that the approach Gillette’s medical team took was a breath of fresh air.
“At the previous health care facilities, it felt like ZaLayaa Jahzara was treated more like a puzzle than a person. It’s not that they weren’t interested, because a puzzle can be intriguing for a while,” Jazzalette says. “But in the end, it started to feel like trying to solve the puzzle became more important than actually addressing and improving the real-life issues we were facing every day. At Gillette, it felt more like, ‘We know that all of these different things are going on and we’re not sure why. If we get to the bottom of it at some point, great, but let’s start by addressing each issue individually for now.’"
Improving Lives in and Outside the Hospital Walls
ZaLayaa Jahzara began seeing a variety of different specialists and now sees more than 20 different medical providers at Gillette. Her appointments include comprehensive evaluations with pediatric medicine and rehabilitation specialists, along with numerous physical and occupational therapy appointments.
Jazzalette says that one aspect of ZaLayaa Jahzara’s care at Gillette that has been particularly helpful has been her appointments with Gillette’s therapeutic recreation specialists.
Therapeutic Recreation falls under the umbrella of the comprehensive care Gillette’s Child and Family Services team provides. Therapeutic recreation in particular focuses on providing access to activities that help people of all ages who have disabilities get involved or learn how to adapt recreational and leisure activities.
“When you have a disability, the world becomes a place that is inherently less open to you. It’s a frustrating truth and very often painful experience that many of our families have,” says Kaitlin Lewis, ZaLayaa Jahzara’s therapeutic recreation specialist at Gillette. “In therapeutic recreation, it’s our goal to find ways for our patients to do everything they’re capable of doing.”
Whether it’s riding a bike, playing on the playground or water skiing, these activities may seem small, but all are milestones that represent progress.
“Therapeutic recreation has been a savior for my kid,” Jazzalette says. “Kaitlin introduced us to so many opportunities we wouldn’t have found otherwise. ZaLayaa Jahzara couldn’t ride a regular bike, so she figured that out. ZaLayaa Jahzara had trouble playing on the playground and Kaitlin figured that out too. Since we’ve started working with Kaitlin, ZaLayaa Jahzara’s been adaptive water skiing, gone to the ice capades, and ran from third base to home plate at a Minnesota Twins game. None of these things would’ve have been possible without Gillette.”
Heading Out Into the World
ZaLayaa Jahzara continues receiving care at Gillette. She has navigated challenges, surgeries, doctor’s visits, and hospital stays that are too many to count. Yet, she still lives with courage, resilience, and a zest for life. She implores people to “see me” – to acknowledge both her invisible disabilities and her existence beyond her them.
Her creative and generous spirit shines through the “love packets” she makes, containing essential items for unhoused individuals. Online games, culinary pursuits, and graphic design are among her many hobbies. And when it comes to activities that challenge her mind and keep her active, chess and golf are her favorites. “In chess, every move tells a story,” ZaLayaa Jahzara says. “And on the golf course, it’s just me and the green – no disabilities, no judgements.”
Though not all of their questions have been answered yet and there may still be challenges to come, the Wandricks take comfort in knowing that they have a team at Gillette that is very much behind them.
“When you don’t spend a lot of time in health care settings, it’s not always easy to discern the difference between one place or another. Being in the hospital is rarely a place anyone wants to be, and often your experience is largely based upon who you end up seeing that day,” Jazzalette says. “All I can say about Gillette is that ZaLayaa Jahzara feels safe there. She actually looks forward to going there. Gillette set a different standard for the level of care we thought was possible, and we’re truly grateful for that.”
ZaLayaa, looking out into her bright future
Gillette kids fuel our mission. You provide the spark. Donate today.
