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!
When I was seven, my music teacher held a charity concert to raise money for schools in Haiti. My brother and I wanted to help donate, so we put together a lemonade stand in our front yard. Thanks to kind friends, neighbors, and strangers, we raised a whole $30. I remember how proud we were of those first $30. The two of us felt like we had really done something to make a difference, no matter how small.
The next summer, we decided to hold another lemonade stand, this time to raise money for our local Children’s Justice Center. And there, the tradition of our “Helping Hands Lemonade Stand” began. Every summer since we’ve chosen a cause and spent a day selling lemonade. Over the last ten years, we’ve been able to donate to both local and international causes. Although we’ve loved every cause, the local ones have been the most meaningful to me. We’ve been able to support a neighbor on a religious mission, a friend with cancer, and the local hospital’s pediatric unit.
One of the best parts of serving our community is seeing the impact our service can make. When donating to the hospital, we purchased activities and toys for kids there, then delivered them in person. I’ll never forget how excited I was as a little 11-year-old to spread joy to the kids in the hospital, and how blessed I felt to be able to serve those in need.
Our little lemonade stand has grown into something so much bigger than ourselves. The real impact is made by the amazing community we live in. Every year people end up donating far more than the lemonade is worth to support us and our causes. Nothing can compare to the feeling of a total stranger showing love and support for our lemonade stand. We explain our purpose while filling up cups of lemonade, and their smiles grow and grow. These interactions have impacted me so much more than these people will ever know. The amount of generosity is mind-blowing and really shows just how good people are. The full circle of service is amazing because all it takes is our desire to serve and help, and that simple act can make a great impact not only on those we serve but on ourselves as well.
I hope to spend my life serving my community the way Judy Fowler did. I want to dedicate my time to those in need, with more than just our lemonade stand but other forms of service as well. As I prepare to graduate from High School and move on to College I know there are so many people in need of service and a helping hand. With the support of this scholarship, I would be able to continue Judy’s legacy by being involved in serving my community, contributing, and making a difference everywhere I go. I know from experience that service brings about the greatest growth and joy we can have and share with others.
