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A journey from diabetes advocate to artist extraordinaire

A journey from diabetes advocate to artist extraordinaire

We often have two sides to our being, a balance of the pragmatic and the creative. Some of us tip more one way; some of us lean more toward the other.

Few people have such a clear balance of both, though, than up-and-coming shoe designer Thom Solo. Solo, whose unique couture creations have graced the feet of such superstars as Lady Gaga and Katy Perry, designs shoes that push the boundaries of what footwear can be in a breathtakingly beautiful and creative way.

His pragmatism, though, is less obvious to the world. Solo, you see, takes on the 24/7 job of managing his type 1 diabeteswith a sense of peace, determination and simple acceptance. He embraces the duality of reaching high in a world of intense creativity all while grounding himself in a world of constant planning and redundancy.

The result? A young man who thrives despite diabetes, and who is on the cusp of becoming a world-renowned name in fashion.

The ‘Harry Potter’ of diabetes advocacy

Solo’s creative mind first showed up in the diabetes world when he was 9 years old. He single-handedly came up with the concept for the JDRF Children’s Congress, now one of the most recognized diabetes advocacy events in the world.

“My mom was going to DC again to advocate for me and I looked at her and said, ‘Why you? Us kids with a celebrity could do better. Who is going to look at a sweet little face saying I need help and say no?’” he recalls.

So in 1999, Solo and his mother, along with 150 other kids, attended the first Children’s Congress, where Solo got his first taste of celebrity, appearing on The Rosie O’Donnell Show and being the center of the event. “It was kind of like being Harry Potter in the first movie,” he says. “Like, I could tell people were kind of whispering: ‘There’s Tommy Solo.’”

At the same time, he says that he had, in that crowd of kids with diabetes, something he’d never had before. “I felt a sense of normalcy. Every kid around me had exactly the same things going on as I did. It was amazing.”

A passion for fashion 

Solo had also discovered fashion as a child.  His godmother remembers him picking out shoes for her when he was 6 years old and doing so with an amazing sense of taste. Solo dove into it at a young age, learning, studying and soaking it all in. As a teen, he hung out with such fashion names of the time as the Olsen twins and Lindsay Lohan, frequenting New York City hot spots to learn and network. “I had to muffle my mouth to hide my braces,” he says of networking with fashion legends at the time.

He also had to do all that while managing diabetes as a teen. His secret weapon? A trusting mom who gave him the space to figure it out.

“The amount of trust and respect that she gave me allowed me to learn, and to take this all seriously,” he says. “I am so in tune with my body. You have one body, one health and one life. I had the space to understand that it was up to me to accept that.”

He says that going on an insulin pump was a giant leap toward making the pragmatism of diabetes simply background noise. “I have a sense of privacy about all this in a very public life,” he says. “I like that.”

The creative side of his mind has impacted the fashion world and is about to do so even more. When legendary designer Alexander McQueen passed away, Solo was inspired to find his own way to marry sculpture and fashion.

He began experimenting with shoes and boots. “My grandma had fake flowers all over her house. I kept going back to that,” he says. He created his first wildly celebrated piece: the Dahlia boot, worn by Lady Gaga.

“People freaked out about it,” says Solo. “It confirmed that I need to keep doing this.”

So with his constant diabetes demands on point, he lets his creative side go. “The shoes are the catalyst for me to talk about the story. The story? It comes to me over time. There is a really deep process of what goes into the shoes, who wears them and what their story is.”

Today, at age 26, Solo is CEO of his own company, Thom Solo Shoes, and is about to share his many stories with the world. Within a year, Thom Solo Shoes will be available at high-end national stores such as Bergdorfs, as well as in smaller boutiques.

He dreams of his shoes being a staple for fashion lovers. And he dreams of using that for more than just fame and fortune. Flash back to that boy with the advocacy idea, because he’s still around.

“All I ever wanted was to use my platform to help the world,” he says. His mom taught him to be vocal about what he cares about. He says he wants to do that for diabetes and other causes that are important to him. “I want to make a difference.”

Moira McCarthy is an acclaimed writer, author and public speaker who has shared her story – and lessons – on raising a child living with type 1 diabetes. Her six books include The Everything Parent’s Guide to Children with Juvenile Diabetes and Raising Teens with Diabetes: A Survival Guide for ParentsMcCarthy is a paid contributor for The DX. All opinions contained in this article reflect those of the contributor, and not of Sanofi US, its employees, agencies, or affiliates.

© 2016 The DX: The Diabetes Experience