Shriners Children's is supporting Rose's every move.
Give her a few minutes, and you'll hear all about her two cats, her love for movies like Spirit and Frozen, her interest in ocelots and tigers, and why she absolutely refuses to swim in the ocean because there are creatures in there.
At 14, Rose is the youngest of seven children and loves spending time with her siblings, especially during one of her favorite holidays, Christmas. Rose is always eager to join whatever adventure or family activity comes next.
“She’s a real rough-and-tumble girl,” said her mom, Sarah. “She just loves to go and do, and then she has the sparkle on top of it.”
The drive to keep moving is a big part of Rose's journey. She was born with Angelman syndrome, a rare genetic condition that affects the nervous system and can cause delayed development, as well as challenges with balance and movement. Her hips, knees and ankles are affected by contractures, leaving her joints fixed in positions that make walking incredibly difficult. Without support, she relies on crawling or using her wheelchair to get around.
Before Rose came home through adoption, Sarah and her husband were already familiar with Shriners Children’s. Two of Rose’s older brothers had received treatment at Shriners Children’s Philadelphia, and the family had witnessed firsthand what the organization could do for children with complex orthopedic conditions. When Rose joined their family and they moved to the Houston area, Shriners Children’s Texas was one of the first places Sarah contacted for her daughter’s care.
“Dr. Janay McKie saw Rose,” Sarah said. “She’s very thorough and treats her like an individual. Dr. McKie looks at the way Rose navigates her life and how to best support her.”
Dr. McKie is very thorough and treats Rose like an individual.
Alongside Chief of Staff of Orthopedics Janay McKie, M.D., Rose was also seen by the Pediatric Orthotic and Prosthetic Services (POPS) team at Shriners Children’s Texas. The orthotists created custom braces that hold Rose’s joints in the straightest possible position her body will permit, bringing her as close as possible to a normal walking posture. Because her feet remain pointed, specialized wedging is incorporated into the design to provide a stable surface beneath her feet and improve balance while walking.
Rose’s care is tailored to the way she moves through the world. POPS Supervisor Meredith Roehrs, L/CPO, recognized that crawling remained an important and functional form of mobility for Rose. Rather than trying to eliminate that movement, she designed knee pads that integrate with Rose's braces, allowing her to crawl more comfortably when she chooses while still supporting her walking goals. Wrapped in a cheetah print selected by Rose, the custom brace helped create a solution that adapted to the way she naturally gets around.
“With these, she can play in the yard. We’re kind of in the country, so she gets to go investigate all those animals that she likes,” Sarah said.
Rose regularly returns to Shriners Children's Texas for follow-up care. As she grows, her team continues to fine-tune her braces and support her mobility goals. That ongoing partnership has helped create opportunities for Rose to stay active and engaged in the things she loves, like science class in school and horseback riding.
During her most recent visit, Rose proudly shared one of her favorite nicknames.
"You can call me The Queen," she said with a smile.
It’s a fitting title. Rose brings confidence and enthusiasm into every room she enters. With the support of her family and care team at Shriners Children's Texas, she continues to draw, play and embrace life with plenty of sparkle.
