4 minute read
Meet Ashlyn Brunet A World Record Story
At age 7, Ashlyn Brunet was diagnosed with Phelan-McDermid Syndrome (PMS), a rare genetic condition caused by a deletion or variant on chromosome 22. While Ashlyn showed early signs of developmental delay as a baby, the severity of her speech and physical challenges weren’t apparent until age two. What followed were years of testing, consultations with specialists, and countless therapies until a chromosomal microarray analysis provided clarity.
PMS is a complex syndrome affecting medical, intellectual, and behavioral functions. It was discovered by Drs. Katy Phelan, Curtis Rogers, and Robert Saul from the Greenwood Genetic Center (GGC) and reported at an American Society of Human Genetics meeting in 1988. Symptoms can range from speech delay or absence, low muscle tone, developmental delays, seizures, and sleep difficulties to autism-like features.
However, no two individuals with PMS are the same, and their needs and abilities can vary and evolve over time.
Despite her challenges, Ashlyn has always been a beacon of joy and resilience. While her condition initially limited her ability to participate in traditional childhood activities such as sports, playdates, and community events, unwavering support from her parents, Dan and Michelle, and the warmth of those around her helped carve out unique opportunities for Ashlyn.
Finding Joy in Sports
Ashlyn found a sense of belonging and joy in attending her brother Zach’s athletic events. Whether it was basketball or baseball, she was Zach’s number-one fan. The sporting community embraced her wholeheartedly, and Ashlyn thrived on the attention and affection of Zach’s teammates and their families. Summers spent at the ball fields cheering for Zach became cherished memories for Ashlyn. When Unified Sports and Special Olympics became available to her, Ashlyn’s life took a new turn. She signed up for bowling, basketball, and track, discovering that her love for sports mirrored her brother’s. Volunteers helped Ashlyn participate, and with their encouragement, she reached milestones that became defining moments. During her first basketball season, she scored her first basket in the final game, sparking cheers from her teammates and the audience. The pure excitement and pride on that day epitomized Ashlyn’s incredible spirit and determination.
A Record-Breaking Brotherhood
In the fall of 2023, Philip Robertson, a father raising awareness for PMS, announced an ambitious plan to golf 200 holes in 24 hours. Together with Derek Frail, Alex Graziani and Lex Mickle, Zach eagerly joined the effort, combining his athleticism with his love for his sister.
On April 12, 2024, Zach and the team set out to achieve the Guinness World Record at Eagle Crest Golf Course in Alma, Arkansas. Ashlyn traveled from Michigan to Arkansas to cheer her brother on. The team’s 24-hour challenge involved walking over 65 miles and ascending 8,000 feet of elevation. At night, play was illuminated by car headlights and glow-in-the-dark golf balls. Their determination paid off when they completed 200 holes, surpassing the Guinness record of 180 holes. They raised over $12,000 for the PhelanMcDermid Syndrome Foundation, exceeding their goal of $10,000.
A Community United
Reflecting on the achievement, Zach said, “I obviously love her very much, and to be able to do something like this for the foundation that supports her is very special to me. It was truly an awesome experience to not only raise money but also set a world record.”
Now, Zach proudly embraces the title of “Ashlyn’s brother,” while Ashlyn continues to inspire through her passion for sports and zest for life. Their parents are endlessly proud of their children’s bond and the meaningful impact they have on the PMS community. With every basket scored and every mile walked, Ashlyn and her family continue to break barriers and shine a light on the importance of inclusion and awareness.
For more information, visit the Phelan-McDermid Syndrome Foundation website at www.pmsf.org.
