Diagnosed with Ehlers-Danlos Syndrome (EDS), a rare connective tissue disorder, her journey has been filled with more challenges than many of us could imagine. Yet, through it all, Tori has found her strength, her passion, and her purpose, often in the most unexpected places.

Suffice it to say, Tori's path to a diagnosis was anything but smooth.

From a young age, she exhibited symptoms that set her apart from her peers—extreme pain, hypermobility, and frequent injuries. 

“I had a lot of party tricks,” she laughed. “I could do things with my limbs and joints that other kids couldn’t. Probably not great looking back at it now, though.”

Despite numerous visits to doctors within a 30-mile radius, Tori was repeatedly told it was just growing pains or sports-related injuries. 

It wasn’t until she saw a specialist in Hillsdale that she finally received a clue about her condition. At 16, after years of relentless searching and being dismissed, she was referred to the University of Michigan, where her condition was identified as Ehlers-Danlos Syndrome.

"Being your own advocate is so important," Tori emphasizes. "When you know something is wrong, you have to keep pushing until you find someone who listens."

From Tori’s perspective, having a good mentality and mindset is one of the most important things. When she couldn’t find a doctor who would listen to her, she felt discouraged and depressed. 

“It’s easy to do that when you’re not getting an answer, and you get in the same rut of thinking it’s never going to get better,” she explained. “To have a good attitude about it is the only way I’ve gotten through it. 

“I played a lot of sports and after I got my diagnosis, I was bummed I couldn’t do them. But then that’s how I found art. Instead of looking at it as what I lost, I decided to think about it as what I found.”

Tori's love for art began when she was just 10 years old. What began as a simple pastime soon became a vital part of her life. She found solace in the vibrant hues of acrylics, painting everything from delicate flowers and graceful butterflies to whimsical woodland creatures.

Her talent didn't go unnoticed; today, her works are proudly displayed in a local shop, and she frequently competes in fairs, showcasing her custom pieces to an ever-growing audience.

"When I couldn't do the things other kids could, painting was something I could always turn to,” said Tori.

Behind Tori's unwavering spirit is a family that has been her rock. Her mother, Angie, her father, and her two brothers—one older and one younger—have stood by her through countless doctor visits, surgeries, and treatments. 

"Hopefully she’ll be done with surgeries at some point so she can lead a more normal life," Angie told us. 

But right now, those critical surgeries are a big part of Tori’s life.

The day after our call with Tori, she was scheduled for her third jaw surgery. She’s had total reconstruction before as well as arthrocentesis, where fluid is pulled from the joint. This third surgery was expected to be somewhere in the middle.

“They’re re-anchoring the disc back in my skull,” Tori explained. “The recovery should be four days of no movement, and sleeping upright. I’m anticipating it’ll take 6-8 months before I can eat normally again. I’ll have predominately soft foods and protein shakes for the first six months, and then will graduate to mac and cheese.”

Surgery is nothing new to Tori.

In addition to her jaw surgeries and countless other procedures, she underwent a salpingectomy (the removal of both fallopian tubes), due to the severity of her EDS. 

“She’ll never be able to have children and she’s only 21 years old,” said Angie.

But as Tori explained, “I was thinking about what I went through and could not put a child through that – or have them possibly grow up without a mother because of the complications.

“It was hard for my mom to come to terms with the fact that I wouldn’t have grandkids, but everyone understood where I was coming from and was really supportive,” she continued. “I’m really interested in giving foster kids a good home one day, especially older kids who might not have the same chance as others.”

The medical world is nothing new to Tori, both as a patient (which she’s been more times than she can count) and now as an employee.

After so many doctors brushed her off because of her age, she decided she wanted to be like that one doctor who listened – to be that same person for someone else. She even got to meet the doctor who diagnosed her and show him how far she had come. 

“He cried because he was so proud,” she told us. “I decided I wanted to be that person for someone else.”

It only takes one. And it can make all the difference.

Just like with artwork, Tori found a new purpose through the challenges of her experience in the medical world. But that doesn’t mean it’s been easy.

Two years ago, Tori discovered prolotherapy, a treatment that has significantly improved her quality of life. This treatment involves injecting a solution into the affected areas to promote tissue repair, providing her with much-needed relief from the relentless pain. However, the cost is prohibitive—$4,000 to $6,000 per session, none of which is covered by insurance.

To afford these treatments, Tori works tirelessly, often pushing her body to its limits, which in turn exacerbates her symptoms. It's a vicious cycle, but one she faces with remarkable resilience.

This is where Chive Charities and our incredible donor family stepped in. Hearing about Tori's plight, we knew we had to help. Thanks to the generosity of our donors, we were able to cover the cost of one of her prolotherapy sessions, a $5,000 gift that provides not just physical relief, but also emotional uplift.

"Chive Charities has given me hope," Tori says. "It’s amazing to know there are people out there who care about my story and want to help."

Six months after regular treatment, she took a break for a little while and felt so much better. She was able to work consistently, volunteer at the local shelter, go for walks which she enjoys, and generally experience everything she likes to do with minimum pain.

Unfortunately, the relief doesn’t last for long before she’s in pain again. 

“There should be more ways to get help,” Angie said. “It’s frustrating that a whole family has to work to help one child who’s also working to help herself. She could sit at home on disability - and she’s heard that a few times - but that’s not how she wants to live. And we don’t want that for her either.

“There has to be resources for people, but you’re the only one we’ve found online.”

It’s why we’re so grateful to our donor community and people like you who make these grants possible. You champion the underdogs and serve the underserved. You fill the gaps where insurance and other resources cannot. When people have nowhere else to turn, they find Chive Charities.

Tori’s journey is a testament to the power of resilience, the importance of community, and the transformative impact of kindness. At Chive Charities, we are honored to be a part of her story and to help her continue shining her light in the world.

If you’d like to support incredible individuals like Tori and help us make a difference, consider donating to Chive Charities. Together, we can bring hope and healing to those who need it most. It only takes one: you. Join us and DONATE HERE.