Born With a Rare Vascular Malformation, 8-Year-Old Kinley Has Endured 22 Surgeries — Now Her Family Is Searching for New Hope

When Kinley Gluch was born, her parents expected to welcome their newborn daughter into the world. Instead, they were suddenly faced with a frightening medical emergency. Within moments of birth, Kinley’s neck became swollen and turned purple, leaving her family desperately wondering whether she would be able to breathe safely.

Doctors eventually discovered that Kinley had a rare congenital venous malformation, a condition involving veins that did not develop normally. Now 8 years old, she has undergone 22 surgeries and numerous treatments. Despite the challenges, Kinley continues to enjoy dancing, playing soccer, drawing and spending time with her friends.

A Rare Condition Present From Birth

Kinley’s neck swelling appeared almost immediately after she was born. Although her vital signs eventually stabilized and she was able to go home, her family still needed answers.

About a month later, an interventional radiologist identified the cause as a venous malformation. In Kinley’s case, the abnormal veins extend throughout her head and neck, surrounding important nerves, blood vessels and parts of her airway.

This complicated anatomy makes treatment especially challenging. Doctors initially considered sclerotherapy, a procedure that delivers medication directly into abnormal blood vessels to help shrink them. However, during Kinley’s first treatment at around one year old, specialists discovered that the malformation was more extensive and carried greater risks than expected.

Twenty-Two Surgeries and Years of Treatment

Because treating the neck lesion posed significant risks, doctors focused on managing other affected areas while carefully monitoring the malformation around her neck and airway.

Over the years, Kinley underwent repeated sclerotherapy sessions, laser treatments and 22 surgeries or procedures. Her family worked to help her understand what each treatment involved, aiming to prepare her rather than leave her frightened by unexpected medical experiences.

Eventually, blood clots developed inside the large neck malformation, creating a potentially life-threatening situation. Kinley then underwent an operation lasting approximately eight hours. Surgeons removed part of her collarbone to access the affected area and carefully separated the malformation from surrounding nerves and blood vessels.

After the operation, Kinley returned home with a sling, a metal plate supporting her collarbone and a surgical drain. Yet she was already thinking about getting back to her everyday activities.

A Childhood Beyond Hospital Rooms

Medical treatment has been a major part of Kinley’s life, but it has not defined everything about her. She loves dance class, soccer and drawing, and she continues to spend time with friends.

When classmates ask about the swelling on her neck, Kinley explains that she has “extra blood vessels.” According to her mother, some children have even described it as her superpower.

Her family’s openness has helped Kinley understand her condition and face medical procedures with greater confidence. Her story also highlights the importance of allowing children with rare conditions to enjoy ordinary childhood experiences whenever possible.

A Possible New Treatment in Italy

For years, Kinley’s family believed she would need recurring treatments well into adulthood. That outlook began to change when her mother connected online with another parent whose child had the same diagnosis.

The family learned about bleomycin electrosclerotherapy, known as BEST, a treatment that combines the medication bleomycin with electrical pulses to help the drug enter abnormal blood vessels more effectively. They also learned about a specialized needleless technique called needleless electrosclerotherapy, or NEST, which may offer a way to treat difficult-to-reach malformations in the airway.

After reviewing Kinley’s medical records, a physician in Milan, Italy, believed she might be a candidate for the treatment. The approach could potentially reduce the need for repeated procedures, but its benefits for Kinley are not guaranteed.

The family faces substantial obstacles. The treatment is not approved by the U.S. Food and Drug Administration and is not covered by their insurance. According to PEOPLE, the estimated cost of the procedure and hospital stay alone is about $60,000, not including travel, accommodation and recovery expenses.

Treating the airway also carries serious risks. Swelling after the procedure could temporarily interfere with breathing, and Kinley might need a temporary tracheostomy while she heals. The family must weigh these risks carefully with her medical team.

A Family Still Holding on to Hope

Kinley’s journey is not a simple story of a condition that has been cured. She continues to face a complex medical challenge, and any new treatment will require careful assessment.

Still, her family’s discovery of another possible option has brought renewed hope. Her mother hopes that sharing their experience will help other families living with rare vascular conditions find information, support and connections they might not otherwise discover.

Through years of procedures and uncertainty, Kinley has continued to make room for the things she loves. Her story is a reminder that children facing serious medical challenges are more than their diagnoses: they are children with interests, friendships, dreams and a determination to keep living their lives.

Source: Jordan Greene, PEOPLE, June 30, 2026.