**Eight-Year-Old Kinley Gluch Seeks Revolutionary Treatment for Rare Condition After 22 Surgeries**
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Born with a rare venous malformation that affects her head, neck, and airway, eight-year-old Kinley Gluch has been through a medical journey that has seen her endure 22 surgeries. After extensive treatments in the United States, Kinley and her family are now exploring an experimental procedure available in Italy that could potentially alter her future.
Kinley’s ordeal began moments after her birth when her neck rapidly swelled and turned purple, prompting immediate medical intervention. Cristen Gluch, Kinley’s mother, recalls the traumatic experience: “It was scary. It was a medical emergency, and we could only wonder if she would be okay.” Though Kinley’s initial condition stabilised, her family was left with no clear understanding of her health issues.
In their search for answers, the family saw a series of specialists, eventually leading them to an interventional radiologist who diagnosed Kinley with a congenital vascular condition known as a rare venous malformation. This condition, resulting from a random genetic mutation during fetal development, interferes with the healthy functioning of blood vessels, impacting Kinley’s airways and major nerves.
Initial attempts to treat her condition involved sclerotherapy, a minimally invasive procedure aimed at shrinking abnormal blood vessels. However, during her first treatment at just one year old, doctors discovered the complexity of her situation when injected dye illuminated the severity of the malformation. “They realised it was beyond what they could manage,” Cristen said, leading to a shift in treatment focus.
Over the years, Kinley underwent numerous treatments, including regular sclerotherapy and laser procedures. Despite her resilience and cheerful outlook, complications escalated when blood clots formed in her neck, necessitating extensive surgery. During an eight-hour procedure, surgeons removed part of her collarbone while meticulously detaching the malformation from surrounding tissues. Throughout it all, Cristen and her husband made it a point to keep Kinley informed about her treatments, avoiding any unwelcome surprises.
Kinley has remained upbeat in the face of adversity, often asking whether she could attend dance class or play with her friends post-surgery. Outside the hospital, she thrives on drawing, playing soccer, and dancing, demonstrating an incredible spirit that has inspired both her family and those around her.
For many years, the Gluch family accepted the notion that Kinley would require ongoing treatment into adulthood. However, a post on Facebook this spring altered their path significantly. Cristen found a mother’s account of her daughter’s treatment for the same rare diagnosis, which introduced the prospect of a revolutionary procedure in Milan, Italy—a treatment called bleomycin electrosclerotherapy (BEST).
This innovative approach employs electrical pulses to enhance the delivery of bleomycin to treat malformations effectively. Kinley already receives bleomycin treatment in the U.S.; however, the new method could reduce or even eliminate many of her vascular malformations. The family was informed by medical experts that Kinley might be a candidate for the procedure, igniting a newfound sense of hope.
Nonetheless, this potential path is fraught with challenges. The procedure is not yet approved by the U.S. Food and Drug Administration, necessitating travel to Italy, which poses a daunting financial burden. Insurance will not cover the cost of both the treatment and travel expenses, placing the financial responsibility on the Gluchs—estimated at around £40,000 excluding additional costs for accommodation and recovery.
Despite these hurdles, the Gluchs remain resolute in pursuing this treatment option. Cristen has taken to social media and created a GoFundMe page to share their journey and raise awareness. The response so far has been overwhelmingly positive, and the family has received support from a community of individuals facing similar health battles.
Reflecting on this entire journey, Cristen expressed her hopes for their family’s story to inspire others in similar situations. “I want parents facing rare diagnoses to know there is hope,” she said, emphasizing the importance of sharing experiences in the pursuit of transformative medical options.
As Kinley prepares for this potential life-changing opportunity in Italy, her family’s journey highlights not only the challenges of dealing with complex medical conditions but also the power of community and shared knowledge in finding hope against all odds.