Girl, 8, Endured 22 Surgeries for Rare Condition. Now She’s Seeking Experimental Treatment Following Facebook Discovery (Exclusive)

When Kinley Gluch took her first breath, what should have been one of the happiest moments of her parents’ lives quickly turned into a medical emergency.

Within moments of her birth, the newborn’s neck suddenly swelled and turned purple, sending doctors rushing her away before her parents fully understood what was happening.

“It was scary,” her mom, Cristen Gluch, 35, tells PEOPLE exclusively over Zoom, glancing over at her daughter. “It’s like, is she gonna be okay? She had this huge thing on her neck. She made lots of noises. [I] was worried, can you breathe?”

Eventually, Kinley’s vital signs stabilized, and she was able to go home to their house in Utah. But while the immediate crisis had passed, her parents still had no explanation for what had happened.

Determined to find answers, they first visited their pediatrician, who referred them to a dermatologist. Even the dermatologist, however, recognized Kinley’s condition was beyond their expertise.

About a month later, the family finally met with an interventional radiologist who identified the cause: a rare venous malformation, a congenital vascular condition caused by a random genetic mutation during fetal development.

According to Johns Hopkins Medicine, unlike healthy veins, which have muscular walls that help move blood through the body, malformed veins never fully develop. The condition affects every patient differently, but in Kinley’s case, the malformation extends throughout her head and neck, wrapping around major nerves, blood vessels and portions of her airway, making treatment especially complex.

At first, doctors believed they could manage the condition with sclerotherapy, a minimally invasive procedure that injects medication directly into abnormal blood vessels to shrink them.

But during Kinley’s first treatment at just 1 year old, they realized they were dealing with something far more extensive than anyone had anticipated.

“They injected the dye and the malformation in her neck just lit up,” Cristen — who also shares an older son and younger daughter with her husband— recalls. “There was so much volume and it was so high-flowing that it ran straight to her lungs and her heart.”

The risks of treating that area were simply too great. Instead, doctors shifted their focus to the smaller malformations throughout Kinley’s body while closely monitoring the one in her neck.

Over the years that followed, Kinley underwent repeated rounds of sclerotherapy, laser treatments and 22 surgeries to control the malformations and prevent them from becoming life-threatening. Through every hospital stay and every procedure, Cristen says she and her husband made one promise to their daughter.

“We’ve always tried to make sure Kinley’s very aware,” she says. “We don’t want any surprises. We’re very honest with her and tell her what the surgery is going to consist of.”

For years, that approach worked but as time went on everything changed. Blood clots began forming inside the large malformation in Kinley’s neck, creating what Cristen describes as a life-threatening situation and leaving surgery as the family’s only option.

During the roughly eight-hour procedure, surgeons first removed part of her collarbone before carefully separating the malformation from surrounding nerves and blood vessels. Specialists from multiple departments remained on standby in case complications arose.

“They pretty much had every doctor in the hospital on call,” Cristen says.

Even after everything she endured, Kinley’s focus never stayed on the surgery for long.

After returning home wearing a sling, a metal plate supporting her collarbone and a large surgical drain in her neck, the then-8-year-old had just one question.

“She’s like, ‘I’m gonna go play with my friends and jump on the trampoline,’ ” Cristen says with a laugh.

That same outlook has carried Kinley through each of the 22 surgeries and procedures she’s undergone.

“‘Can I go to dance class tonight?’ That’s usually what she asks,” Cristen says. “Nothing phases her.”

Outside the hospital, Kinley loves drawing, playing soccer and dancing with her team. When classmates ask about the swelling on her neck, she simply tells them she has “extra blood vessels.”

“They’re like, ‘That’s your superpower,’ ” Cristen says. “Kids are incredible.”

Watching her daughter face each challenge with that kind of resilience has transformed Cristen’s own outlook.

“She helps me be strong,” she says. “Watching her strength gives me so much more strength.”

For nearly eight years, the Gluchs believed this was simply Kinley’s future: treatment after treatment, surgery after surgery, with no end in sight.

“We’ve always been told Kinley’s just going to have treatments every few months until she’s an adult, and even through adulthood, with hormone changes, it’ll flare up and she’ll need treatments,” Cristen says. “We had just accepted that that’s how her condition was going to be managed.”

Then, earlier this spring, a Facebook post stopped Cristen in her tracks.

While scrolling online in April, she came across another mother’s page documenting her daughter’s journey with the same rare diagnosis. The family had recently traveled to Italy for a specialized procedure Cristen had never heard of.

“It just kind of stopped me in my tracks,” she says.

Curious, Cristen reached out.

The two mothers began talking, and for the first time since Kinley’s diagnosis, Cristen learned there might be another option.

The treatment, called bleomycin electrosclerotherapy (BEST), is performed by a physician in Milan and combines the medication bleomycin with electrical pulses that dramatically improve how effectively the drug reaches abnormal blood vessels.

Kinley already receives bleomycin sclerotherapy in the United States every few months. But according to Cristen, the electrical pulses used during BEST create microscopic pores in cells, allowing the medication to be absorbed hundreds — and potentially even a thousand — times more effectively than traditional sclerotherapy.

Even more promising, the physician developed a specialized needleless version of the procedure known as needleless electrosclerotherapy (NEST).

As far as the family knows, he is currently the only physician in the world able to use the technique to safely treat the malformations inside Kinley’s airway — an area doctors in the United States have been unable to reach.

“We didn’t even know this was in the world,” Cristen says. “We didn’t know it was an option.”

After reviewing Kinley’s medical records, the physician believes she may be a candidate for the procedure.

If successful, the treatment could dramatically alter the course of Kinley’s condition. Instead of undergoing bleomycin sclerotherapy every few months for much of her life, Cristen says BEST has the potential to significantly reduce — and possibly even eliminate — many of Kinley’s malformations while also reducing her lifetime exposure to bleomycin.

That could be especially important because bleomycin carries a lifetime dosage limit due to the risk of pulmonary fibrosis, a form of lung scarring that can develop after prolonged exposure.

“It’s the first time we’ve felt like there could actually be another path,” Cristen says.

Pursuing that path, however, won’t be easy.

Because BEST has not yet been approved by the U.S. Food and Drug Administration, it isn’t available in the United States, meaning the family must travel overseas if they hope to move forward.

Insurance also won’t cover the procedure or travel expenses, leaving the Gluchs responsible for roughly $60,000 for the surgery and hospital stay alone, in addition to airfare, housing and several weeks of recovery in Italy.

The procedure itself also comes with significant risks. Like Kinley’s current treatments, BEST can cause swelling, soreness, blistering, skin irritation and changes in skin pigmentation. But because doctors would be treating the malformations inside her airway, Cristen says the family’s greatest concern is the swelling that could follow.

The inflammation is expected to be significant enough that Kinley may need a temporary tracheostomy to help her breathe safely while she heals. As with any surgery, there is also a risk of infection. Despite those uncertainties, Cristen says there has never been any question about what comes next.

“We’ll do everything we can,” she says.

To help make the trip possible, Cristen began documenting Kinley’s journey on social media and GoFundMe.

What started as a way to update friends and family has grown into something much bigger: a community of families living with venous malformations and other rare vascular conditions who regularly share advice, encouragement and hope.

Ironically, it’s the same kind of community that ultimately led the Gluchs to Italy in the first place.

Looking back, Cristen still finds it remarkable that another mother’s willingness to share her daughter’s story online may end up changing Kinley’s life.

Now, she hopes their family’s story can do the same for someone else.

“I hope that we can pay that forward and do that for others as well,” she says. “Just like this other little girl, her mom sharing is literally going to change Kinley’s life.”

For parents who may be facing a rare diagnosis of their own, that’s the message Cristen hopes they’ll take away.

“I want them to know there’s hope,” she says.