My name is Peyton Smith, and I am a seventeen-year-old living in South Jordan, Utah. I am the typical teenager in many ways. But in many other ways, I am not the typical teenager at all. I have been judged from the moment I was born. Although many people will experience this later in their life – because of their gender, skin color or any number of other attributes about them – it happened to me immediately upon birth. I didn’t look like other infants and the doctors in the NICU began cataloging my differences. Seventeen years ago, the gene for my rare syndrome had not yet been identified so those clinical symptoms were utilized to make a diagnosis – Nager Syndrome. Had my syndrome been identified in utero, my parents would have met with a geneticist, and they would have been told that my syndrome was incompatible with life. Call it good luck or chance, but the anomalies associated with my syndrome that should have been caught at the 20-week ultrasound were missed. Nager Syndrome has impacted every aspect of my life. At three days old I had a tracheostomy placed for a permanent airway and at three weeks a gastrostomy tube since I couldn’t swallow safely. While in the hospital, I was diagnosed with severe bilateral hearing loss, a heart condition and multiple skeletal anomalies. At six weeks old, my parents took me home to a living room that had been converted into a make-shift hospital room overflowing with machines and medical supplies. I was considered so fragile that I qualified for 23.5 hours a day of private nursing care. At the time, many children who were moderately affected like me did not survive into adulthood. There was no manual to reference for my parents or medical providers as to what my future would look like. As I began considering my plans after high school, there wasn’t a question that I wanted to attend college. Early on, I toured Utah State University and fell in love with the campus. The only problem was, it was several hours away from my home. It wouldn’t be possible to commute, and I would be required to live in the dorms. Not surprisingly, my parents had some concerns about me living away from home with a feeding tube and a tracheostomy. This was compounded by multiple hospitalizations in high school related to complications from my feeding tube. Over the last several years, I have begun learning how to care for myself in preparation for being on my own. It has added a layer of stress to high school that most teenagers will never really understand. We also learned that once I attend college, I will no longer qualify for a Medicaid waiver that has helped to cover my significant medical costs. Ironically, it is because I am trying to be independent and won’t require a caregiver that I will lose eligibility for the program. It would be easier for so many reasons to just attend a local college and live at home, but I am not willing to give up on my dream. I have spent many days of my life in a hospital bed or a waiting room. As a result, I want to be an interior designer focusing on medical facilities for children. Nager Syndrome happened to me – I had no control over that. However, I do have control over how I utilize my experiences and challenges to improve the world around me.

I have been judged from the moment I was born. Although many people will experience this later in their life – because of their gender, skin color or any number of other attributes about them – it happened to me immediately upon birth. I didn’t look like other infants and the doctors in the NICU began cataloging my differences like circling a rental car and identifying all the dings and scratches that you don’t want to be charged for later. Seventeen years ago, the gene for my rare syndrome had not yet been identified so those clinical symptoms were utilized to make a diagnosis – Nager Syndrome. Had my syndrome been identified in utero, my parents would have met with a geneticist, and they would have been told that my syndrome was incompatible with life. There would have been a recommendation that the pregnancy be terminated. Call it good luck or chance, but the anomalies associated with my syndrome that should have been caught at the 20-week ultrasound were missed. Nager Syndrome has impacted every aspect of my life. At three days old I had a tracheostomy placed for a permanent airway and at three weeks a gastrostomy tube since I couldn’t swallow safely. At six weeks old, my parents took me home to a living room that had been converted into a make-shift hospital room overflowing with machines and medical supplies. My doctors discovered I had severe bilateral hearing loss, aortic valve disease, cleft palate, multiple anomalies of my upper extremities, asthma and allergies. I was considered so fragile that I qualified for 23.5 hours a day of private nursing care. At the time, many children who were moderately affected like me did not survive into adulthood. There was no manual to reference for my parents or medical providers as to what my future would look like. The medical community set the bar very low, which is all too common for those with disabilities. Disability is often defined as it relates to the ability to work, attend school or function the way society expects someone to. The reality is that people with disabilities are unemployed or underemployed at much higher levels than those who do not have a disability. This has motivated me to pursue higher education to ensure I do not become one of the statistics. I have spent many days of my life in a hospital bed or a waiting room. As a result, I want to be an interior designer focusing on medical facilities for children. I have taken multiple interior design classes, joined FCCLA in high school and participated at the regional and state level in interior design competitions. During college I intend to pursue internships with interior design firms to gain knowledge and experience so that following graduation, I will be able to seek a job in my chosen field. When I am asked what motivates me, it is an opportunity to prove to the medical community that I am compatible with life. Other families receiving the news that their child will have Nager Syndrome deserve to have examples like me who are not only surviving but thriving. One of my future goals is to mentor children with life-threatening or chronic health conditions to help them accomplish their own achievements. I have had many cheerleaders in my life, and I can’t wait to be that for someone else. Nager Syndrome happened to me – I had no control over that. However, I do have control over how I utilize my experiences and challenges to improve the world around me. Thank you for this opportunity!

I have been judged from the moment I was born. Although many people will experience this later in their life – because of their gender, skin color or any number of other attributes about them – it happened to me immediately upon birth. I didn’t look like other infants and the doctors in the NICU began cataloging my differences like circling a rental car and identifying all the dings and scratches that you don’t want to be charged for later. Seventeen years ago, the gene for my rare syndrome had not yet been identified so those clinical symptoms were utilized to make a diagnosis – Nager Syndrome. Had my syndrome been identified in utero, my parents would have met with a geneticist, and they would have been told that my syndrome was incompatible with life. There would have been a recommendation that the pregnancy be terminated. Call it good luck or chance, but the anomalies associated with my syndrome that should have been caught at the ultrasound were missed. Nager Syndrome has impacted every aspect of my life. At three days old I had a tracheostomy placed for a permanent airway and at three weeks a gastrostomy tube since I couldn’t swallow safely. At six weeks old, my parents took me home to a living room that had been converted into a make-shift hospital room overflowing with machines and medical supplies. My doctors discovered I had severe bilateral hearing loss, aortic valve disease, cleft palate, multiple anomalies of my upper extremities, asthma and allergies. At the time, many children who were moderately affected like me did not survive into adulthood. Disability is often defined as it relates to the ability to work, attend school or function the way society expects someone to. The reality is that people with disabilities are unemployed or underemployed at much higher levels than those who do not have a disability. This has motivated me to pursue higher education to ensure I do not become one of the statistics. I have spent many days of my life in a hospital bed or a waiting room. As a result, I want to be an interior designer focusing on medical facilities for children. I have taken multiple interior design classes, joined FCCLA in high school and participated at the regional and state level in interior design competitions. During college I intend to pursue internships with interior design firms to gain knowledge and experience so that following graduation, I will be able to seek a job in my chosen field. When I am asked what motivates me, it is an opportunity to prove to the medical community that I am compatible with life. One of my future goals is to mentor children with life-threatening or chronic health conditions to help them accomplish their own dreams. I have had many cheerleaders in my life, and I can’t wait to be that for someone else. After college, I would like to follow in my mother’s footsteps and serve on the Utah Disabilities Advisory Council and the Utah Regional Leadership Education in Neurodevelopment Disabilities (URLEND) program to provide my perspective as a young adult living with disabilities and significant medical issues. Nager Syndrome happened to me – I had no control over that. However, I do have control over how I utilize my experiences and challenges to improve the world around me. Receiving this scholarship will allow me to continue my education and continue on my path to supporting myself in the future. Living my my disability - despite a tracheostomy, I learned to swim!

I have been judged from the moment I was born. Although many people will experience this later in their life – because of their gender, skin color or any number of other attributes about them – it happened to me immediately upon birth. I didn’t look like other infants and the doctors in the NICU began cataloging my differences like circling a rental car and identifying all the dings and scratches that you don’t want to be charged for later. Seventeen years ago, the gene for my rare syndrome had not yet been identified so those clinical symptoms were utilized to make a diagnosis – Nager Syndrome. Had my syndrome been identified in utero, my parents would have met with a geneticist, and they would have been told that my syndrome was incompatible with life. There would have been a recommendation that the pregnancy be terminated. Call it good luck or chance, but the anomalies associated with my syndrome that should have been caught at the 20-week ultrasound were missed. Nager Syndrome has impacted every aspect of my life. At three days old I had a tracheostomy placed for a permanent airway and at three weeks a gastrostomy tube since I couldn’t swallow safely. At six weeks old, my parents took me home to a living room that had been converted into a make-shift hospital room overflowing with machines and medical supplies. My doctors discovered I had severe bilateral hearing loss, aortic valve disease, cleft palate, multiple anomalies of my upper extremities, asthma and allergies. I was considered so fragile that I qualified for 23.5 hours a day of private nursing care. At the time, many children who were moderately affected like me did not survive into adulthood. I was fortunate that within days of coming home from the NICU, I became involved with early intervention services – physical therapy, occupational therapy, hard of hearing teacher and speech and feeding therapy. At three, I attended Utah Schools for the Deaf and Blind focusing on oral speech. When I entered kindergarten, I was able to be integrated into a regular classroom with my nurse. I had both an IEP and a medical plan through middle school and eventually transitioned to a 504 plan. Disability is often defined as it relates to the ability to work, attend school or function the way society expects someone to. The reality is that people with disabilities are unemployed or underemployed at much higher levels than those who do not have a disability. This has motivated me to pursue higher education to ensure I do not become one of the statistics. I have spent many days of my life in a hospital bed or a waiting room. As a result, I want to be an interior designer focusing on medical facilities for children. I have taken multiple interior design classes, joined FCCLA in high school and participated at the regional and state level in interior design competitions. During college I intend to pursue internships with interior design firms to gain knowledge and experience so that following graduation, I will be able to seek a job in my chosen field. When I am asked what motivates me, it is an opportunity to prove to the medical community that I am compatible with life. One of my future goals is to mentor children with life-threatening or chronic health conditions to help them accomplish their own dreams. I have had many cheerleaders in my life, and I can’t wait to be that for someone else. After college, I would like to follow in my mother’s footsteps and serve on the Utah Disabilities Advisory Council and the Utah Regional Leadership Education in Neurodevelopment Disabilities (URLEND) program to provide my perspective as a young adult living with disabilities and significant medical issues. Nager Syndrome happened to me – I had no control over that. However, I do have control over how I utilize my experiences and challenges to improve the world around me. Receiving this scholarship will allow me to continue my education and continue on my path to supporting myself in the future. Thank you for this opportunity!

I have been judged from the moment I was born. Although many people will experience this later in their life – because of their gender, skin color or any number of other attributes about them – it happened to me immediately upon birth. I didn’t look like other infants and the doctors in the NICU began cataloging my differences like circling a rental car and identifying all the dings and scratches that you don’t want to be charged for later. Seventeen years ago, the gene for my rare syndrome had not yet been identified so those clinical symptoms were utilized to make a diagnosis – Nager Syndrome. Had my syndrome been identified in utero, my parents would have met with a geneticist, and they would have been told that my syndrome was incompatible with life. There would have been a recommendation that the pregnancy be terminated. Call it good luck or chance, but the anomalies associated with my syndrome that should have been caught at the 20-week ultrasound were missed. Nager Syndrome has impacted every aspect of my life. At three days old I had a tracheostomy placed for a permanent airway and at three weeks a gastrostomy tube since I couldn’t swallow safely. At six weeks old, my parents took me home to a living room that had been converted into a make-shift hospital room overflowing with machines and medical supplies. My doctors discovered I had severe bilateral hearing loss, aortic valve disease, cleft palate, multiple anomalies of my upper extremities, asthma and allergies. I was considered so fragile that I qualified for 23.5 hours a day of private nursing care. At the time, many children who were moderately affected like me did not survive into adulthood. Disability is often defined as it relates to the ability to work, attend school or function the way society expects someone to. The reality is that people with disabilities are unemployed or underemployed at much higher levels than those who do not have a disability. This has motivated me to pursue higher education to ensure I do not become one of the statistics. I have spent many days of my life in a hospital bed or a waiting room. As a result, I want to be an interior designer focusing on medical facilities for children. I have taken multiple interior design classes, joined FCCLA in high school and participated at the regional and state level in interior design competitions. During college I intend to pursue internships with interior design firms to gain knowledge and experience so that following graduation, I will be able to seek a job in my chosen field. When I am asked what motivates me, it is an opportunity to prove to the medical community that I am compatible with life. One of my future goals is to mentor children with life-threatening or chronic health conditions to help them accomplish their own achievements. I have had many cheerleaders in my life, and I can’t wait to be that for someone else. After college, I would like to follow in my mother’s footsteps and serve on the Utah Disabilities Advisory Council and the Utah Regional Leadership Education in Neurodevelopment Disabilities (URLEND) program to provide my perspective as a young adult living with disabilities and significant medical issues. Nager Syndrome happened to me – I had no control over that. However, I do have control over how I utilize my experiences and challenges to improve the world around me. Receiving this scholarship will allow me to continue my education and continue on my path to supporting myself in the future.

I consider myself fortunate to have been the recipient of many acts of service over my lifetime and I believe that is one of the reasons I am so motivated to give back in the future. When I was born, I didn’t look like other infants. Seventeen years ago, the gene for my rare syndrome had not yet been identified so clinical symptoms were utilized to make a diagnosis – Nager Syndrome. Had my syndrome been identified in utero, my parents would have met with a geneticist, and they would have been told that my syndrome was incompatible with life. There would have been a recommendation that the pregnancy be terminated. Call it good luck or chance, but the anomalies associated with my syndrome that should have been caught at the 20-week ultrasound were missed. Nager Syndrome has impacted every aspect of my life. At three days old I had a tracheostomy placed for a permanent airway and at three weeks a gastrostomy tube since I couldn’t swallow safely. At six weeks old, my parents took me home to a living room that had been converted to a make-shift hospital room overflowing with machines and medical supplies. I was considered so fragile that I qualified for 23.5 hours a day of private nursing care. At the time, most children who were moderately affected like me did not survive into adulthood. While I was still in the NICU, a local church group brought knitted booties, a hat and a blanket. My parents were so touched, and we still have them today! A few months later when I was readmitted for a complication with my g-tube the California Highway Patrol brought by Christmas presents for all the children in the PICU. As a patient of children’s hospitals, I have been the recipient of countless blankets, toys and visits from service animals. I was also the recipient of a wish trip when I was in elementary school after a difficult facial surgery and got to experience how an act of service can make the toughest times better. Acts of service don’t have to be expensive or time consuming. While I was in the NICU, my mom would spend hours by my crib. Unfortunately, there were never enough chairs to go around and if she couldn’t find one to borrow, she would be on her feet for long periods of time. One morning, an older gentleman who was cleaning the unit noticed my mom and went to a neighboring unit and dragged a chair back with him. It was not part of his job description, and he didn’t seek any praise. He just saw a need and did what he could to help. This story reminds me that I can contribute in small ways, and it can be just as meaningful. My parents have instilled in me the desire to pay it forward. Because of my health challenges, I have had to be creative when finding ways to impact the world around me in a positive way. I have recently become involved with Post It Love, an organization that provides handwritten notes to elementary school students to encourage and support them. I have donated over a hundred notes to the organization and hope to continue participating in the years to come. You can’t help but be more positive yourself when creating positive messages for others! I was admitted to Primary Children’s Hospital Christmas Eve of 2023. As a result, I decided to work on a service project to make the holiday season brighter for others. I sewed over 60 stuffed bears that I donated to Toys for Tots in December of 2024. It is important to me that I prove to the medical community that I am compatible with life. Other families receiving the news that their child will have Nager Syndrome deserve to have examples like me who are not only surviving but thriving. One of my future goals is to mentor children with life-threatening health conditions to help them accomplish their own achievements and celebrate their value to society. I have had many cheerleaders in my life, and I can’t wait to be that for someone else. Nager Syndrome happened to me – I had no control over that. However, I do have control over how I utilize my experiences and challenges to improve the world around me. Thank you for this opportunity!

I have been judged from the moment I was born. Although many people will experience this later in their life – because of their gender, skin color or any number of other attributes about them – it happened to me immediately upon birth. I didn’t look like other infants and the doctors in the NICU began cataloging my differences like circling a rental car and identifying all the dings and scratches that you don’t want to be charged for later. Seventeen years ago, the gene for my rare syndrome had not yet been identified so those clinical symptoms were utilized to make a diagnosis – Nager Syndrome. Had my syndrome been identified in utero, my parents would have met with a geneticist, and they would have been told that my syndrome was incompatible with life. There would have been a recommendation that the pregnancy be terminated. Call it good luck or chance, but the anomalies associated with my syndrome that should have been caught at the 20-week ultrasound were missed. Nager Syndrome has impacted every aspect of my life. At three days old I had a tracheostomy placed for a permanent airway and at three weeks a gastrostomy tube since I couldn’t swallow safely. At six weeks old, my parents took me home to a living room that had been converted to a make-shift hospital room overflowing with machines and medical supplies. I was considered so fragile that I qualified for 23.5 hours a day of private nursing care. At the time, most children who were moderately affected like me did not survive into adulthood. There was no manual to reference for my parents or medical providers as to what my future would look like. The medical community set the bar very low, which is all too common for those with disabilities. People with disabilities are three times more likely to be unemployed than those without a disability. In addition, people with disabilities are more likely to be underemployed at higher rates than those without a disability. This has motivated me to pursue higher education to ensure I do not become one of the statistics. I have spent many days of my life in a hospital bed or a waiting room. As a result, I want to be an interior designer focusing on medical facilities for children. I have taken multiple interior design classes, joined FCCLA in high school and participated at the regional and state level in interior design competitions. When I am asked what motivates me, it is an opportunity to prove to the medical community that I am compatible with life. Other families receiving the news that their child will have Nager Syndrome deserve to have examples like me who are not only surviving but thriving. One of my future goals is to mentor children with life-threatening health conditions to help them accomplish their own achievements and celebrate their value to society. I have had many cheerleaders in my life, and I can’t wait to be that for someone else. For my peers, teachers and administrators I am usually the first person they have ever encountered with a tracheostomy. It has not stopped me from doing anything I wanted to do. By attending college away from home, I hope to continue to be an example of a “first” by demonstrating that people with disabilities can be part of Utah State despite significant physical challenges. “The severity of one’s disability does not determine their level of potential. The greatest barriers that persons with disabilities have to overcome are not steps or curbs, it’s expectations.” Karen Clay

I have been judged from the moment I was born. Although many people will experience this later in their life – because of their gender, skin color or any number of other attributes about them – it happened to me immediately upon birth. I didn’t look like other infants and the doctors in the NICU began cataloging my differences like circling a rental car and identifying all the dings and scratches that you don’t want to be charged for later. Seventeen years ago, the gene for my rare syndrome had not yet been identified so those clinical symptoms were utilized to make a diagnosis – Nager Syndrome. Had my syndrome been identified in utero, my parents would have met with a geneticist, and they would have been told that my syndrome was incompatible with life. There would have been a recommendation that the pregnancy be terminated. Call it good luck or chance, but the anomalies associated with my syndrome that should have been caught at the 20-week ultrasound were missed. Nager Syndrome has impacted every aspect of my life. At three days old I had a tracheostomy placed for a permanent airway and at three weeks a gastrostomy tube since I couldn’t swallow safely. At six weeks old, my parents took me home to a living room that had been converted to a make-shift hospital room overflowing with machines and medical supplies. I was considered so fragile that I qualified for 23.5 hours a day of private nursing care. At the time, most children who were moderately affected like me did not survive into adulthood. There was no manual to reference for my parents or medical providers as to what my future would look like. The medical community set the bar very low, which is all too common for those with disabilities. People with disabilities are three times more likely to be unemployed than those without a disability. In addition, people with disabilities are more likely to be underemployed at higher rates than those without a disability. This has motivated me to pursue higher education to ensure I do not become one of the statistics. I have spent many days of my life in a hospital bed or a waiting room. As a result, I want to be an interior designer focusing on medical facilities for children. I have taken multiple interior design classes, joined FCCLA in high school and participated at the regional and state level in interior design competitions. When I am asked what motivates me, it is an opportunity to prove to the medical community that I am compatible with life. Other families receiving the news that their child will have Nager Syndrome deserve to have examples like me who are not only surviving but thriving. One of my future goals is to mentor children with life-threatening health conditions to help them accomplish their own achievements and celebrate their value to society. I have had many cheerleaders in my life, and I can’t wait to be that for someone else. For my peers, teachers and administrators I am usually the first person they have ever encountered with a tracheostomy. It has not stopped me from doing anything I wanted to do. By attending college away from home, I hope to continue to be an example of a “first” by demonstrating that people with disabilities can be part of Utah State despite significant physical challenges. Thank you for this opportunity!

I have been judged from the moment I was born. Although many people will experience this later in their life – because of their gender, skin color or any number of other attributes about them – it happened to me immediately upon birth. I didn’t look like other infants and the doctors in the NICU began cataloging my differences like circling a rental car and identifying all the dings and scratches that you don’t want to be charged for later. Seventeen years ago, the gene for my rare syndrome had not yet been identified so those clinical symptoms were utilized to make a diagnosis – Nager Syndrome. Had my syndrome been identified in utero, my parents would have met with a geneticist, and they would have been told that my syndrome was incompatible with life. There would have been a recommendation that the pregnancy be terminated. Call it good luck or chance, but the anomalies associated with my syndrome that should have been caught at the 20-week ultrasound were missed. Nager Syndrome has impacted every aspect of my life. At three days old I had a tracheostomy placed for a permanent airway and at three weeks a gastrostomy tube since I couldn’t swallow safely. At six weeks old, my parents took me home to a living room that had been converted to a make-shift hospital room overflowing with machines and medical supplies. I was considered so fragile that I qualified for 23.5 hours a day of private nursing care. At the time, most children who were moderately affected like me did not survive into adulthood. There was no manual to reference for my parents or medical providers as to what my future would look like. The medical community set the bar very low, which is all too common for those with disabilities. Disability is often defined as it relates to the ability to work, attend school or function the way society expects someone to. The reality is that people with disabilities are unemployed or underemployed at much higher levels than those who do not have a disability. This has motivated me to pursue higher education to ensure I do not become one of the statistics. I have spent many days of my life in a hospital bed or a waiting room. As a result, I want to be an interior designer focusing on medical facilities for children. I have taken multiple interior design classes, joined FCCLA in high school and participated at the regional and state level in interior design competitions. During college, I intend to pursue internships with interior design firms to gain knowledge and experience so that following graduation, I will be able to seek a job in my chosen field. Success for me is the ability to support myself and live independently. Through the Redefining Victory Scholarship, it would allow me to offset my college expenses and start my adult life without extensive debt. This will be critical as my out-of-pocket costs after my health insurance is significant due to my medical needs. “The severity of one’s disability does not determine their level of potential. The greatest barriers that persons with disabilities have to overcome are not steps or curbs, it’s expectations.” Karen Clay Thank you for this opportunity!

I have been judged from the moment I was born. Although many people will experience this later in their life – because of their gender, skin color or any number of other attributes about them – it happened to me immediately upon birth. I didn’t look like other infants and the doctors in the NICU began cataloging my differences like circling a rental car and identifying all the dings and scratches that you don’t want to be charged for later. Seventeen years ago, the gene for my rare syndrome had not yet been identified so those clinical symptoms were utilized to make a diagnosis – Nager Syndrome. Had my syndrome been identified in utero, my parents would have met with a geneticist, and they would have been told that my syndrome was incompatible with life. There would have been a recommendation that the pregnancy be terminated. Call it good luck or chance, but the anomalies associated with my syndrome that should have been caught at the 20-week ultrasound were missed. Nager Syndrome has impacted every aspect of my life. At three days old I had a tracheostomy placed for a permanent airway and at three weeks a gastrostomy tube since I couldn’t swallow safely. At six weeks old, my parents took me home to a living room that had been converted to a make-shift hospital room overflowing with machines and medical supplies. I was considered so fragile that I qualified for 23.5 hours a day of private nursing care. Once home, I was diagnosed with severe, conductive bilateral hearing loss, asthma and aortic valve disease. At the time, most children who were moderately affected like me did not survive into adulthood. The medical community set the bar very low, which is all too common for those with disabilities. In 2025, I am on track to graduate high school. The journey to graduation has not been easy. I have dealt with anxiety and ADD and during high school after many years of stable health, I experienced serious complications with my feeding tube. In my sophomore year, I had a gastric bleed from my feeding tube that went undiagnosed for weeks. I ended up in the ICU with blood transfusions and spent several weeks in the hospital recovering. Unfortunately, my grades suffered during this period. My junior year, it happened a second time and required surgery to move the feeding tube to a new location. And then two weeks before my senior year I required a third revision surgery after ongoing episodes of gastric prolapse. These challenges, although frustrating, have provided me opportunities to develop characteristics like resilience and compassion. I would not be the person I am today without them. I want to be an interior designer and would love to design children’s hospitals after spending so much time in them! I have taken multiple interior design classes, joined FCCLA and participated at the regional and state level in interior design competitions. When I am asked what motivates me, it is the opportunity to prove to the medical community that I am compatible with life. Other families receiving the news that their child will have Nager Syndrome deserve to have examples like me who are not only surviving but thriving. One of my future goals is to mentor children with life-threatening health conditions to help them accomplish their own achievements. I have had many cheerleaders in my life, and I can’t wait to be that for someone else. Thank you for this opportunity to share my story.

I have been judged from the moment I was born. Although many people will experience this later in their life – because of their gender, skin color or any number of other attributes about them – it happened to me immediately upon birth. I didn’t look like other infants and the doctors in the NICU began cataloging my differences like circling a rental car and identifying all the dings and scratches that you don’t want to be charged for later. Seventeen years ago, the gene for my rare syndrome had not yet been identified so those clinical symptoms were utilized to make a diagnosis – Nager Syndrome. Had my syndrome been identified in utero, my parents would have met with a geneticist, and they would have been told that my syndrome was incompatible with life. There would have been a recommendation that the pregnancy be terminated. Call it good luck or chance, but the anomalies associated with my syndrome that should have been caught at the 20-week ultrasound were missed. Nager Syndrome has impacted every aspect of my life. At three days old I had a tracheostomy placed for a permanent airway and at three weeks a gastrostomy tube since I couldn’t swallow safely. At six weeks old, my parents took me home to a living room that had been converted to a make-shift hospital room overflowing with machines and medical supplies. At the time, most children who were moderately affected like me did not survive into adulthood. In 2025, I am on track to graduate high school. The journey to graduation has not been easy. During high school I experienced serious complications with my feeding tube. In my sophomore year, I had a gastric bleed from my feeding tube that went undiagnosed for weeks. I ended up in the ICU with blood transfusions and spent several weeks in the hospital recovering. My junior year, it happened a second time and required surgery to move the feeding tube to a new location. And then two weeks before my senior year I required a third revision surgery after ongoing episodes of gastric prolapse. These challenges, although frustrating, have provided me opportunities to develop characteristics like resilience and compassion. I would not be the person I am today without them. There have been many times over the last few years I have felt defeated as a result of my medical issues and the impact they have had on my academic and social life. I suffer from anxiety and PTSD but I have developed coping strategies over the last few years. Because of my participation with Hope Squad at Bingham High School, I have learned mindfulness techniques – this has been especially helpful during medical procedures that create a lot of anxiety for me. Another coping strategy I use is to find opportunities to help others. I have created encouraging note cards for students through the Post It Love organization. In addition, I sewed 60 bears to donate to Toys for Tots in time for Christmas this year. I have found it is easier to be positive when I am helping others who are also struggling. I try to concentrate on what my hopes are for the future. I want to be an interior designer and would love to design children’s hospitals! One of my future goals is to mentor children with life-threatening health conditions to help them accomplish their own achievements. I have had many cheerleaders in my life, and I can’t wait to be that for someone else.

I have been judged from the moment I was born. Although many people will experience this later in their life – because of their gender, skin color or any number of other attributes about them – it happened to me immediately upon birth. I didn’t look like other infants and the doctors in the NICU began cataloging my differences like circling a rental car and identifying all the dings and scratches that you don’t want to be charged for later. Seventeen years ago, the gene for my rare syndrome had not yet been identified so those clinical symptoms were utilized to make a diagnosis – Nager Syndrome. Had my syndrome been identified in utero, my parents would have met with a geneticist, and they would have been told that my syndrome was incompatible with life. There would have been a recommendation that the pregnancy be terminated. Call it good luck or chance, but the anomalies associated with my syndrome that should have been caught at the 20-week ultrasound were missed. Nager Syndrome has impacted every aspect of my life. At three days old I had a tracheostomy placed for a permanent airway and at three weeks a gastrostomy tube since I couldn’t swallow safely. At six weeks old, my parents took me home to a living room that had been converted to a make-shift hospital room overflowing with machines and medical supplies. I was considered so fragile that I qualified for 23.5 hours a day of private nursing care. At the time, most children who were moderately affected like me did not survive into adulthood. There was no manual to reference for my parents or medical providers as to what my future would look like. The medical community set the bar very low, which is all too common for those with disabilities. While in the NICU, I was diagnosed with aortic valve disease and a very rare unicuspid aortic valve. I was referred to a cardiologist immediately and they have been following me ever since. They watched me carefully during my infant and adolescent growth spurts to ensure I was not showing signs of my valve needing to be replaced. As I head into adulthood, I know it is not a matter of if I will need a valve replacement but when. It feels a little like a ticking time bomb, but you aren’t actually sure how many more seconds you have left! My heart disease diagnosis hasn’t changed my plans, but I recognize that I will have a major cardiac surgery in the future and there is no time to waste in accomplishing my goals. I have spent many days of my life in a hospital bed or a waiting room. As a result, I want to be an interior designer focusing on medical facilities for children. I have taken multiple interior design classes, joined FCCLA in high school and participated at the regional and state level in interior design competitions. During college I intend to pursue internships with interior design firms to gain knowledge and experience so that following graduation, I will be able to seek a job in my chosen field. When I am asked what the driving force in my life is, it is the opportunity to prove to the medical community that I am compatible with life. One of my goals is to mentor children with life-threatening health conditions to help them accomplish their own achievements and celebrate their value to society. I have had many cheerleaders in my life, and I can’t wait to be that for someone else. Thank you for this opportunity!

Suicide is a leading cause of death in the United States. A suicide in my family was like a bomb going off that has impacted us for multiple generations. I learned about Bingham High School’s Hope Squad and connected with their purpose of reducing youth suicide. Bingham High School recognized the importance of Hope Squad and created a full-year class. I have been fortunate to be part of Hope Squad my 10th, 11th and 12th grade years. Anxiety has been a part of my life for as long as I can remember. I have a rare, genetic syndrome called Nager Syndrome. Had my syndrome been identified in utero, my parents would have met with a geneticist, and they would have been told that my syndrome was incompatible with life. There would have been a recommendation that the pregnancy be terminated. Nager Syndrome has impacted every aspect of my life. At three days old I had a tracheostomy placed for a permanent airway and at three weeks a gastrostomy tube since I couldn’t swallow safely. At six weeks old, my parents took me home to a living room that had been converted to a make-shift hospital room overflowing with machines and medical supplies. I was considered so fragile that I qualified for 23.5 hours a day of private nursing care. At the time, most children who were moderately affected like me did not survive into adulthood. There was no manual to reference for my parents or my medical providers as to what my future would look like. Because of all my surgeries and hospitalizations, I have developed severe anxiety around medical procedures. By participating in Hope Squad, I have learned techniques like mindfulness which I have had the unfortunate opportunity to use many times over my high-school career! Although my mental health struggles may differ from my peers, it has provided me the ability to be a supportive friend. In addition to individual interactions, as part of Hope Squad we plan and execute school-wide events to promote positivity and mental health awareness. Each year we visit middle schools in the area and give presentations about the importance of mental health. One of my favorite activities is standing by the front doors on the first day and welcoming all the students back to school. As a member of Hope Squad, we partnered with HOSA (Health Occupations Students of America) and completed a Mental Health promotion presentation. My sophomore year we placed 3rd and my junior year we placed 1st at the state competition and represented Utah at the international HOSA competition. Although I didn’t join Hope Squad with my own mental health needs in mind, I now recognize how important it is to prioritize my mental health as it creates more academic success, improved life skills and a healthier future. One of my goals is to become a mentor for other children with chronic or life-threatening medical conditions to help them overcome their own health challenges.

I have been judged from the moment I was born. Although many people will experience this later in their life – because of their gender, skin color or any number of other attributes about them – it happened to me immediately upon birth. I didn’t look like other infants and the doctors in the NICU began cataloging my differences like circling a rental car and identifying all the dings and scratches that you don’t want to be charged for later. Seventeen years ago, the gene for my rare syndrome had not yet been identified so those clinical symptoms were utilized to make a diagnosis – Nager Syndrome. And with that diagnosis, my journey through a life of low expectations began. Had my syndrome been identified in utero, my parents would have met with a geneticist, and they would have been told that my syndrome was incompatible with life. There would have been a recommendation that the pregnancy be terminated. Call it good luck or chance, but the anomalies associated with my syndrome that should have been caught at the 20-week ultrasound were missed. Nager Syndrome has impacted every aspect of my life. At three days old I had a tracheostomy placed for a permanent airway and at three weeks a gastrostomy tube since I couldn’t swallow safely. At six weeks old, my parents took me home to a living room that had been converted to a make-shift hospital room overflowing with machines and medical supplies. At the time, most children who were moderately affected like me did not survive into adulthood. There was no manual to reference for my parents or my medical providers as to what my future would look like. The medical community, being notoriously conservative, set the bar very low. I don’t have the luxury of an invisible disability where it may go unnoticed. My tracheostomy, unusual facial structure and bilateral bone conduction hearing aids will give me away. I have struggled with asthma, food allergies and more surgeries than I can count on my eight fingers! My sophomore year of high school, I spent weeks with a gastric ulcer created by my gastrostomy tube that went undiagnosed and led to emergency surgery, blood transfusions and a lengthy hospital stay. Despite being told by my doctors that they could find nothing in medical literature where this had ever happened before, my junior year of high school it happened again. It wasn’t the first time and likely won’t be the last time that I am featured in a medical journal. I don’t know who I would have been had I not been born with Nager Syndrome. I do know that I have had to overcome challenges and persevere. Nager Syndrome will always be a part of my story, but it doesn’t have to be the final chapter. My health is unlikely to remain stable throughout my college career or my life, but I have to keep pushing that bar as high as it can go. I have to prove to myself, my family and the medical community that I can survive and thrive! “The severity of one’s disability does not determine their level of potential. The greatest barriers that persons with disabilities have to overcome are not steps or curbs, it’s expectations.” Karen Clay