A visual impairment and kidney transplant can’t prevent Vista Murrieta High School class of 2018 graduate who is headed to Mt. San Jacinto College
MURRIETA – Although Vista Murrieta High School senior Courtney Nuestro describes her childhood as mostly normal, it was her kindergarten teacher who first noticed that Courtney seemed to be bumping into things. She was tripping even more than the typical 5-year old developing skills of coordination and body control. After a trial with glasses that didn’t seem to help, her parents and teachers concluded that something was off.
“I wasn’t cognizant of how bad it really was and we started seeing doctors and specialists,” Courtney said.
The original diagnosis was of Retinitis Pigmentosa (RP)—a genetic eye disease in which the back wall of the eye is damaged. Years later, tests aimed at zeroing in on a definitive diagnosis would reveal RP as an incorrect conclusion.
Staff members from the Riverside County Office of Education (RCOE) began working with Courtney as a 6-year old first grade student. Together with employees from Murrieta Valley Unified School District, a plan was developed to help Courtney prepare for what would likely be a continual degeneration of her vision which she described as akin to a sighted person trying to look through a plastic straw. She soon began using a cane to navigate around her world where she could only make out some shapes and colors with varying degrees of detail.
“My vision felt stable to me, but I was having progressive loss and didn’t notice it because it was very gradual,” Courtney said.
A CIRCLE OF SUPPORT EMERGES
Courtney’s parents and three older sisters were always supportive and pushed her to excel and continue doing great things.
“They never coddled me. My sister, Michaela, used to tell me that if she could give me her eyes so that I would be able to see, she would do it,” Courtney shared.
At school, instructional aides from RCOE would help her find her way around the curriculum and the campus of school to ensure Courtney had every chance to succeed. This included introducing her to Braille so that she would be familiar with it as she aged and her sight diminished.
“I hated learning Braille because I didn’t like getting pulled out of class when the rest of the class got to hear stories or do art,” Courtney admitted.
Courtney’s resistance faded and she became proficient in Braille by putting in years of practice and dedication to learning—especially during the most challenging lessons of algebra and geometry.
In 8th grade, additional symptoms led Courtney’s doctors to conduct more tests and she was re-diagnosed with Senior-Loken Syndrome—a very rare recessive genetic mutation that is estimated to affect only about 1 in 1 million people worldwide. The disorder was not only affecting her vision, but would deteriorate and ultimately destroy her kidney function and lead to death without early intervention and a treatment plan.
Doctors began treatment to prolong Courtney’s kidney function, but the long-term prognosis for a potential kidney transplant appeared on the horizon immediately.
“Here I was trying to figure out my future with a visual impairment which was hard enough. Then, this was added into the juggling act and I didn’t really know what the rest of my life would hold,” Courtney said. “In a naïve way, you think you know what your life will look like. But, in the blink of an eye, a single circumstance can change everything.”
The summer after her freshman year at Vista Murrieta High School, Courtney’s doctors led her through the main testing to prepare for a kidney transplant in case of an emergency. This included a search for potential donor matches.
After being told that she would eventually need a transplant, Courtney recalls experiencing a lot of guilt because somebody else may have to lose their life and that their family would lose somebody special so she could live.
“Living with that was very hard. I didn’t want to have such a sacrifice from others so that I would have a life,” Courtney said. “I started to delve into my faith as a Catholic Christian and realized that my suffering had meaning, and that somebody would be donating because they wanted to help me with a gift of love that could help me thrive.”
After many tests, Courtney’s sister, Michaela, was identified as a perfect match, but the transplant wouldn’t happen until more than three years later in January of 2018—halfway through her senior year of high school.
“We both had no idea that when she wished that she could give me her eyes for sight, that years later, it would be a different organ that she would give in order to give me life,” Courtney said.
NEW YEAR, NEW KIDNEY
The transplant was scheduled for January 24, 2018, at two different hospitals. Courtney at the Rady Children’s Hospital in San Diego, and her now 25-year old sister, Michaela, at University of California San Diego Medical Center. The family was split between the two hospitals and the two sisters communicated with each other through video chat before undergoing the nearly six-hour procedure.
“I thought about the transplant similar to the way people think of death. You know it will happen eventually, but you don’t believe it until you’re thrust into the deep end of it really happening,” Courtney said. “When you’re a teenager, and you learn you have something that could potentially kill you, I began to understand it in a whole new way.”
The complicated transplant procedure was successful and Courtney spent eight days in the hospital to start the process of physical and emotional recovery. She missed two months of the second semester of her senior year—far from ideal timing for a student taking AP Government as part of her full load of classes before preparing to graduate.
Because of her weakened immune system, Courtney required a home hospital teacher. Courtney’s Vista Murrieta High School math teacher, Mrs. Applegate, volunteered and even delivered math lessons for her over the phone. Courtney downloaded lessons from her high school teachers and emailed assignments to try and keep on track for graduation.
When she returned to school, the transition back to a typical seven-hour school day was physically and mentally draining. She has recovered much of her strength, but her immune system is still in a weakened state. In order to maximize the lifespan of her donated kidney, Courtney drinks at least three liters of water, and must keep healthy through diet and exercise. Her medication plan is constantly changing as she takes several anti-rejection, immune-suppressant medications and supplements daily.
“I realize I’ve received a second chance at life. Twenty-two people die each day because they don’t receive an organ transplant. I have to honor and treasure this gift that my sister gave me so that I can make each day worthwhile,” Courtney said.
A FUTURE EDUCATOR EMERGES
In elementary school, Courtney described herself as shy and soft-spoken. It wasn’t until she took a drama class in middle school that things changed.
“After the drama class, I wasn’t afraid anymore to stand up on stage and sing and dance and act,” Courtney said. “The stage skills I learned from drama class have helped me gain confidence and now I really enjoy motivational speaking.”
One of her middle school drama teachers, Murrieta Valley USD’s Carol Hernandez, remembers the decision to cast Courtney as the lead in that year’s production.
“When I cast Courtney in the lead in eighth grade, I knew she was going to work hard to memorize the lines and lyrics to the songs. What I didn’t see coming was her desire to perform without her cane,” Hernandez said, now the Visual and Performing Arts Coordinator for MVUSD. “She amazed all of her peers as she walked, skipped, and danced across the stage at every performance, while I cried in the back of the auditorium—knowing that this moment would change her life forever while the audience was completely unaware of the magnificence of the moment.”
Courtney described how, as a high school student, presenting to elementary students about life with a visual impairment was one of the best experiences she’s ever had. With assistance from teachers, and aides, Courtney prepared hands-on activities to help students understand how to use a cane, learn Braille, and more.
“I learned about advocacy and how telling people about your life can break stereotypes,” Courtney shared. “I learned that I have the ability to shape a lot of lives.”
After she walks across the graduation stage, she will begin her college career at the Menifee campus of Mt. San Jacinto College. Her goal is to follow in the footsteps of the many educators who have been at her side throughout her life and become a teacher for the visually-impaired.
“I was blessed to know early on that I knew what I wanted to do with my life,” Courtney said. “I am still nervous because it’s a crazy world out there. Life is nerve-wracking enough for an 18-year old after graduating from high school before entering college. When you add in a visual impairment and a chronic illness into the mix, it naturally causes some extra fears.”
HELP ALONG THE WAY
Courtney credits her teachers, instructional assistants, classmates, and family for leading her down the pathway towards independence. Their help has led to her being able to navigate her world with more confidence, self-advocacy, and better communication skills to explain her situation.
A bevy of educators from the Riverside County Office of Education and Murrieta Valley Unified School District have worked together to help Courtney succeed since she was in the first grade. This support took on many forms: Developing long-range goals of learning Braille, providing assistive technology and tools, mobility assistants to help her find her way around campus, and coordinating the continuity of her academics through a kidney transplant in her final semester of high school.
Before Courtney launches into her next life adventure in college, she has already shared with her teachers how determined she is to walk across the graduation stage on her own.
“Courtney is a student who will never say ‘I quit’ or ‘It’s too hard’,” said Karri Fenstermacher, who works with Courtney as one of RCOE’s teachers for the visually-impaired. “I am fortunate to have the opportunity to work with such a smart and creative person whose goal is to take my job from me someday.”
Courtney has also left an indelible imprint on one of her Braille transcribers, Cheri Norris.
“If it wasn’t for Courtney, I wouldn’t be where I am today,” Norris said. “After working as an instructional assistant with Courtney, she inspired me to focus on truly learning Braille.”
In preparation for attending Mt. San Jacinto College in the fall, RCOE Mobility Specialist Jaimy Garcia has already joined Courtney for two visits to the college’s Menifee campus to begin the discovery and mental mapmaking of what represents an entirely new world for Courtney.
“We’ve only been there twice, and she can already find her way to certain offices,” Garcia said. “She is very strong and independent.”
In their quest to prepare Courtney to reach her academic and career goals, those in her circle of support have been inspired by her fierce, indomitable spirit.
“Sometimes, when I really don’t want to get up in the morning, I tell myself that each day is a blessing from God and that there is a plan for me to do great things in this world,” Courtney said. “And then I hit the ground running.”