ZaLayaa Wandrick is 9 years old. She’s an excellent cook, crafter and loves science, soccer and coding, but for much of her life, has had to deal with multiple sensory and complex medical conditions.
Since her infancy, ZaLayaa has endured a variety of different symptoms that have impacted her daily life. But the most frustrating thing about all of it has been that the underlying cause of these issues remains a mystery.
“ZaLayaa's seen plenty of doctors in her life. It’s not like we aren't curious or actively trying to find answers,” ZaLayaa's 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 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 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 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'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'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 couldn’t ride a regular bike, so she figured that out. ZaLayaa had trouble playing on the playground and Kaitlin figured that out too. Since we’ve started working with Kaitlin, ZaLayaa'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
For now, ZaLayaa will continue to receive care at Gillette. 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 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
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