Is there anything sweeter than genuine childhood friendships? In a heartwarming video from 2018 that has since gone viral, a then-3-year-old Ruby Hoffman—who has a rare disorder that affects mobility—is seen alongside her best friend Abbie in a candid display of love, friendship, and encouragement that is beyond words. On a driveway race track built for tricycles and, in this case, an electric toy car modified into a kid-friendly motorized wheelchair, Abbie helps Ruby by placing her hands on the bar that steers her “car.” Their tender interaction will melt your heart.
The Hoffman family, from West Manchester Township, emphasize that their daughter has been a “rare Ruby” from the start in so many ways. Both of her parents have brown eyes, but she was born with blue. At just 16 months old, Ruby was diagnosed with leukodystrophy, which refers to a family of 50 rare diseases that affect that brain’s white matter. Ruby has a form called H-ABC, and, as of 2016, is one of eight known cases in the world. Leukodystrophy is a degenerative disease, causing seemingly normal children to lose their abilities to crawl, walk, swallow, speak, smile, and laugh. Mindy Hoffman, Ruby’s mom, knows all of this. In the Facebook post where she originally shared the video, she says, “It’s not easy for Ruby or our family. But, then, in this moment between Abbie with my daughter Ruby, we are inspired by the power of love and connection.”
Right now, leukodystrophy is incurable and eventually fatal. In most cases, children who have already developed symptoms cannot be treated, which is why newborn screenings will be a crucial tool for finding children with leukodystrophy at birth, so treatment can be administered before symptoms appear. In France and Italy, researchers are even pioneering revolutionary gene therapies that will do more than cure children, they will ensure children never become sick in the first place. The Hoffmans are fighting for a cure by doing everything they can to spread awareness about leukodystrophy, as well as raising funds to assist the doctors who are working to help kids like Ruby, and to support the patients and families at “Ruby’s hospital.”
Having such a debilitating disease hasn’t stopped the Hoffmans from living life to the fullest, though. Mindy updates their Facebook page often, and Ruby can be seen playing with her cousins, celebrating her seventh birthday party at the roller skating rink, and cuddling with her mom. “Having her in our lives is a blessing,” says Hoffman. “She’s so happy. She’s brought out the best in me. She’s a joy in our lives.”
Most recently, Ruby became the licensed driver and owner of her very own power wheelchair, a huge achievement and quite a step up from her modified electric car from a few years ago. The wheelchair utilizes head array technology—the pads behind her head have built-in sensors that allow Ruby to move her chair just by applying pressure. Ruby’s excitement is evident in the video, in the way her smile widens as she moves the chair across the room.
To learn more about leukodystrophy, visit The Calliope Joy Foundation. To support Ruby and other kids with this rare disease, you can donate to Ruby’s GoFundMe and Foundation to Fight H-ABC.
Ruby Hoffman is “a rare Ruby” with leukodystrophy—a rare progressive disease.
She’s so rare that she’s only 1 of 8 people in the world with this disorder.
Despite her challenges, she’s always had support from family friends, including her very first best friend, Abbie.
Watch this precious example of the girls’ beautiful friendship as Abbie helps Ruby use her motorized wheelchair when they were just 3 years old:
Now, four years later, she is the “licensed driver” of her own power wheelchair.
Ruby Hoffman: Facebook | YouTube
h/t: [Reddit]
All images via A Rare Ruby.
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