Rachel is a high school senior who loves to dance and spend time with friends, participate in plays and musicals and compete in pageants like the Miss Amazing pageant, which she won in 2021 – earning the title “Iowa Miss Amazing Teen Queen.”
Her title isn’t the only “amazing” thing about Rachel. From overcoming challenges brought on by seizures to recovering skills after brain surgery, she’s inspired ChildServe team members with her hard work and bravery since she was three years old.
Rachel was born at 37 weeks and was in the ICU for 10 days for apnea/blue spells. She continued meeting milestones until she was two-years-old when an MRI revealed lesions throughout the right hemisphere of Rachel’s brain. Initially, she was diagnosed with epilepsy and was later clinically diagnosed with Rasmussen’s Encephalitis, a rare neurological disease that can cause intense seizures and difficulty with motor skills and speech.
Rachel began her journey with ChildServe in outpatient speech, occupational and physical therapies to help her work towards her developmental goals. By the time she was five, the seizures she was having were so frequent and severe that the right side of her brain was beginning to deteriorate. To put a stop to these damaging seizures, Rachel underwent a hemispherectomy, a rare brain surgery in which much of the right half of her brain was disconnected and removed, at UCLA Medical Center in Los Angeles.
The surgery was a success, but recovery would take time as her brain learned to compensate and she regained the use of the left side of her body. To help make the transition from hospital to home easier, Rachel spent two months in ChildServe’s Inpatient Rehabilitation Program receiving intensive therapy and nursing care.
“After Rachel’s surgery, her ChildServe occupational therapist came to our home to look it over, so we knew how to best prepare for her discharge,” said Rachel’s dad, Craig. “We were able to prepare our home with extra handrails, carpeting, a play area and things like that so we had a safer environment for her to come home to.”
After being discharged, Rachel continued to receive outpatient therapies at ChildServe. At 11 years old, Rachel underwent another surgery, this time on her left foot and leg at Gillette Children’s Specialty Healthcare in St. Paul. For one month following this surgery, Rachel returned to the inpatient rehabilitation unit at ChildServe where she worked towards her recovery goals and prepared to transition home.
“Both times when we were discharged from the inpatient rehabilitation unit, ChildServe had a care team meeting that included our AEA school nurse consultant, her school special ed teacher, brain injury waiver case manager and everyone involved in her transition home,” said Rachel’s mom, Roxanne. “It made for a seamless transition back into the community and home.”
For several years, Rachel continued her weekly therapy at ChildServe and today continues to visit periodically for appointments with Dr. Fred Klingbeil.
“When Rachel was discharged from therapy, her team at ChildServe encouraged her to be involved in other activities as a fun way to continue her work in therapy as she got older,” said Roxanne. “She’s been a cheerleader for the high school basketball team for four years, participates in Special Olympics bowling, track & field and dance. At a visit to ChildServe, we met the directors of a local, adaptive sports organization. Rachel joined their soccer and basketball leagues and I helped coach their Special Olympics unified basketball team. These activities are fun ways for her to connect with her peers while continuing to work on her range of motion.”
Rachel has made the most of her dance skills by competing in the Iowa Miss Amazing pageant for the last nine years and this year joined the Iowa State Dance Team Championships as the very first participant in their “Beyond Limits” category! For most of the talent portions of the pageants Rachel competes in, she has been performing lyrical-style dance.
After winning the title of Iowa Miss Amazing Teen Queen in 2021, Rachel had the opportunity to compete in the National Miss Amazing pageant in Nashville, TN.
“It was my first time ever going to a national pageant,” said Rachel. “It was basically the same as a state pageant, but nationals were a little bit more competitive and I competed against girls from other states. I got to have my hair and makeup done, meet the judges and do an interview, perform a talent, walk in formal wear and introduce myself to the audience. At nationals, I was most proud of trying my best and making new friends from different states.”
Rachel also had the honor of returning to the Iowa Miss Amazing pageant to crown the 2022 Iowa Miss Amazing Teen Queen.
From watching their daughter experience surgeries to cheering her on as she performs on stage, Craig and Roxanne are very grateful that ChildServe was there throughout their journey.
“We live in rural Iowa, so we didn’t have these types of support and services,” said Roxanne. “We were thrilled to find a provider dedicated to children with complex medical needs such as our daughter. Her needs changed over the years from epilepsy to brain surgery to leg and foot surgery to spasticity and a second brain surgery, but ChildServe was always able to meet her needs with their various services.”
Whether she’s on stage or participating in school activities, Rachel continues to push herself and work hard to reach her goals – we couldn’t be more proud to see her flourish!
ChildServe improves the health and well-being of nearly 5,800 children each year through specialized clinical, home, and community-based programs and services. We serve children with developmental delays, disabilities, injuries, and other special healthcare needs.