An eight-year-old Utah girl, Kinley Gluch, is preparing to travel to Italy for a pioneering experimental therapy to treat a rare and complex venous malformation that has required her to undergo 22 surgeries. The condition, characterized by abnormal clusters of veins, has caused her significant health challenges, including breathing difficulties and blood clots.
Kinley's health issues began shortly after her birth in 2016 when her neck swelled and turned purple. Initial medical evaluations revealed extensive venous malformations, a condition affecting one to two in 10,000 people. Unlike more common, low-flow malformations, Kinley's condition involved high-flow blood coursing through abnormally formed veins in her neck, posing risks of cardiac strain, bleeding, and tissue damage.
Early attempts to manage the malformation with bleomycin sclerotherapy proved challenging. During her first treatment at age one, doctors discovered the extent and rapid blood flow of the malformation made it too dangerous for standard treatment. Subsequent years saw Kinley develop blood clots within the malformed veins, increasing the risk of catastrophic events like pulmonary embolism or life-threatening internal bleeding. This led to a high-risk, eight-hour surgery at age three to surgically remove the largest malformation, a procedure her parents described as terrifying.
Despite the success of that surgery, Kinley's journey has continued with recurring bleomycin sclerotherapy treatments to manage remaining malformations on her face, lip, neck, mouth, and airway. She also suffers from severe obstructive sleep apnea due to malformations in her airway, requiring nightly use of a CPAP machine.
The family's attention has now turned to a clinic in Italy offering a treatment called bleomycin electrosclerotherapy (BEST). This method combines the standard bleomycin medication with electrical pulses, creating temporary pores in the cell membranes of malformed blood vessels to significantly enhance drug penetration. This technique could allow for greater effectiveness with fewer treatments and lower drug doses, addressing concerns about Kinley reaching a lifetime dosage limit for bleomycin.
The family faces significant financial and emotional challenges, with the treatment in Italy estimated to cost approximately $60,000 for the procedure and hospital stay, in addition to travel and accommodation expenses. They have launched a GoFundMe campaign to help cover these costs. Despite the uncertainties and the overwhelming nature of seeking medical care abroad, Kinley's mother expressed her daughter's resilience and bravery in facing these challenges.