Beauty pageants, by stereotype, are shallow competitions.
The cliché that “beauty is only skin deep” doesn’t currently apply to these events, nor have they ever. In a room filled with toddlers in tiaras and full makeup, 2-year old Ruby Hoffman sits in a wheelchair, wearing jean shorts and a t-shirt that says “Ain’t no mama like the one I got.”
She’s right – Ruby’s mother, Mindy Hoffman, isn’t just any pageant mom, just like Ruby isn’t just any pageant participant.
"They called her number on stage, and we got up there, and they said, 'Ruby, we just wanted you to know that you won prettiest eyes, prettiest smile, prettiest hair, best dressed,'" said Mindy in an interview with Fox 43
The 2-year old competed in her first event, the Tiny Toddler Miss Pennsylvania pageant, in May and completed a clean sweep in the 2-year old age group. What makes Ruby stand out from the crowd, though, is that the crowning came approximately a year removed from being diagnosed with hypermyelination with atrophy of the basal ganglia and cerebellum (H-ABC), a rare brain disorder.
The currently untreatable disease is caused by a mutation in the TUBB4A gene, and has less than 100 known patients worldwide. It is a progressive leukodystrophy that shares some common features with multiple sclerosis (MS), and symptoms of it, like movement difficulties and delay in mental development or learning deficiencies, typically begin in infancy or early childhood.
Winning the Tiny Toddler Miss Pennsylvania pageant led Mindy and Ruby to the East Coast Pageant Nationals in New Jersey. While other participants donned dresses and practiced dance routines, Mindy and Ruby handed out bracelets to attendees, along with cards that explained the toddler’s uncommon condition. One girl, Mindy said, even climbed up onto Ruby’s wheelchair to give her a hug.
“We were kind of plain Jane,” Mindy said to YDR.com
, “but we got our message across.”
“It was so sweet,” Mindy said. “She loved every second of it – seeing the girls with their hair done and beautiful dresses and handing them bracelets. She loves meeting people.”
Her eagerness to meet people and participate in the pageant did not go overlooked by the judges. With comments like “touching,” “love the determination,” and “beautiful” accompanying perfect 10’s from the judges, Ruby was named the pageants “Miss Spirit” and “Future Queen.” Mindy was recognized, too, as the pair took home the title “Mother-Daughter Queens,” perhaps the first to do so in casual clothing.
Mindy and Ruby plan to continue raising awareness for H-ABC by attending future pageants. They have already committed to returning to the East Coast USA Pageant next year to crown the 2018 Miss Spirit and Mother-Daughter Queens.
To follow Ruby's journey, check out her Facebook page; A Rare Ruby
For more patient stories from within the rare disease community, follow Rare Disease Report