Celebrating Vaughan: A Story of Love, Strength, and Community
As we recognize Rare Disease Day this February 28th, Better2gether is sharing Vaughan’s journey.
Vaughan, who’s turning 13 in March, is described by his mom, Jill, as, “one of the kindest, most social people you will ever meet.” He loves to laugh, listen to music, and most of all, spend time with his three-year-old identical twin half-sisters, his grandparents who visit from Florida and Nicaragua, and his loving stepdad who takes him around the neighborhood on his adaptive bike.
Vaughan was diagnosed with Bohring-Opitz Syndrome just before he turned two, after a long road of tests and specialist visits. When he was born, everything seemed "perfect," according to his mom; but within hours, doctors noticed things weren’t quite right. He had trouble regulating his temperature, struggled with feeding, and had physical characteristics that left medical teams puzzled. After extensive genetic testing, Vaughan became the 42nd confirmed case of Bohring-Opitz Syndrome in the world at that time. “Eleven years ago,” Jill explains, “The life expectancy and the prognosis of those born with Bohring-Opitz Syndrome was short and unknown.” Today, there are about 300 known cases. Thanks to increased awareness and early diagnosis, more children are getting the support they need.
Life with a rare disease presents many challenges, but Vaughan’s family members choose to focus on their resilience and their blessings. “Through our countless battles and trials, we know we would never trade it – not even for a second – because we have an amazing kid,” Jill shares. “We would never trade the amazing people we have met along the way and the opportunities we have been given as a result. We know the challenges for Vaughan are never-ending and exhausting. We know our sacrifices will always continue.”
Vaughan’s family has made several sacrifices—selling a home to buy an accessible van, switching jobs, and advocating for Vaughan’s educational needs—but they say that the love and the incredible people they’ve met along the way make it all worth it. Vaughan’s mom, Jill, has even helped another family find closure by identifying a decades-old mystery diagnosis of Bohring-Opitz Syndrome for their late son, showing just how powerful advocacy and connection can be.
Better2gether has been a game-changer for Vaughan’s family, making them feel seen, supported, and included. “Better2gether makes our family feel like we are part of something, that we belong,” Jill explains. “Having a child with special needs is so isolating – not only for parents, but it can be for siblings, as well. Better2gether makes our whole family feel included. During hospital visits, there have been many times where I don’t know who to turn to, and Better2gether is just a call or text away. We have been able to access resources that we would not have even known about if we weren’t part of Better2gether.”
For Vaughan’s family, faith is at the core of everything they do. They believe in turning obstacles into opportunities and sharing Vaughan’s story to educate and inspire others. Their journey is a testament to resilience, love, and the strength of a supportive community.
This Rare Disease Day, we celebrate Vaughan and all the incredible families navigating life with a rare disease. With organizations like Better2gether, families don’t have to face their journey alone.