It all started with a silly Instagram post
Back in May 2017, Angie recorded a quick video of Ruby answering some silly questions. It was adorable, so she posted it to Instagram for her small circle of friends to see. The next morning she woke up to find it had gone completely viral overnight.
The sudden attention was a lot to process and Angie had lots of mixed emotions about it. But after really thinking it through, she realized they’d been given something pretty incredible: a platform. This was their chance to help people understand Ruby’s rare condition and show the world that people with disabilities are just as capable and just as deserving of love, kindness, and belonging as anyone else.
Fast forward to today, and Angie and Ruby have built a community of over 1 million followers across TikTok, YouTube, Instagram, and Facebook. Their mission is to create connection, amplify disability representation, spread kindness, and show what a full life can look like.
But our story started long before Instagram
Before there were followers, videos or viral posts, there was just the two of us.
Angie’s pregnancy was difficult and filled with unknowns. Ruby’s head and kidneys were measuring smaller than what was typical and Angie was told that she wasn’t developing properly. She was encouraged to have an amniocentesis, and against her best judgment, she did. The results came back normal.
Her doctors were still convinced that Ruby wouldn’t make it to term and offered Angie an abortion. But Angie refused and chose to carry Ruby to term.
Angie never gave up on Ruby. She knew that Ruby’s life had a purpose and that she was going to change the world.
Ruby was born seven weeks early on November 11, 2004 at 3 lbs 9 oz. Her early birth was planned due to distress in utero and declining amniotic fluid.
From the earliest days of her life, doctors painted a pretty bleak picture for Ruby’s future. They told Angie that Ruby likely wouldn’t walk, talk, or be able to do much of anything on her own. But Angie would never give up on Ruby. She knew that Ruby’s life had a unique purpose and that she would change the world.
Angie’s belief didn’t make Ruby’s journey any easier. She spent 56 days in the NICU recovering from bowel surgery, learning how to take a bottle and growing — very slowly. Angie finally took her home weighing only 4 lbs 6 oz, with a diagnosis of a rare genetic syndrome that didn’t yet have a name — it was just a listing of symptoms.
The first year of Ruby’s life was a blur of over 100 doctor and therapy appointments to help Ruby get the best start at life and to manage her many health conditions. Angie quickly stepped into the world of parenting a medically complex child, doing it all by herself as a single mom.
Throughout Ruby’s childhood, there many challenges, but there were also many miracles. Though she was developing more slowly than other children her age, Ruby had started to sit up, crawl, babble and attempt to walk. She finally took her first steps at age 3, with Angie, nana and auntie Mandy cheering her on. Once she started walking and talking, Angie knew that her beliefs were true — Ruby was going to prove every single one of those doctors wrong.
Meet Ruby the rare gem and her service dog, Charlie
When you first meet Ruby, you’ll probably notice her gorgeous blonde hair and beautiful smile. If you’re lucky, you might even get to hear her adorable giggle.
But what truly sets Ruby apart is her kind and loving heart. She is the first to say “hello” to people walking by, is always eager to offer help when someone is in need, and she never passes up an opportunity to hug a friend.
Ruby also happens to live with an ultra-rare genetic condition called Strømme syndrome.
As far as Angie knows, there are fewer than 50 people in the world living with this condition. It causes a host of conditions, inluding microcephaly (small head), developmental delays, microphthalmia (small eyes), bowel disorders, kidney dysfunction and other systemic issues. Despite her diagnosis, Ruby lives a full and beautiful life.
Ruby is 21 years old and still loves mac and cheese, listening to Frozen’s “Let it Go” in hundreds of different languages, dancing in her adapted dance class, playing Miracle League baseball and hanging out with her friends. Most of all, she loves snuggling with her service dog, Charlie.
Ruby will be starting in an adult day program this fall and we look forward to sharing more about her next steps in the near future.
In 2020, Ruby was blessed to welcome her amazing service dog, Charlie, into her life. Charlie is a golden retriever/labrador mix who was trained by Pawsitive Perspectives Assistance Dogs (PawPADs) in Minnesota.
Charlie knows 80 different cues and assists Ruby by opening accessible doors, tapping elevator buttons, turning light switches on and off, and retrieving items that she drops and cannot locate herself due to her vision impairment. He can even pick up a napkin, throw it away in the garbage and push the garbage door shut all by himself. Charlie also provides emotional support to Ruby during stressful medical appointments by giving her deep pressure stimulation, a cue called, “squish.” He has been the best addition to her life.
Join Ruby’s Kindness Club!
Ruby’s Kindness Club newsletter is a free note from Ruby (with help from her mom), filled with life updates, kindness ideas, and small moments to brighten your day.
You can also subscribe to Ruby’s Art List so you’re the first to know if Ruby sells her art.
