Taz and Terry Kelly’s Story of Loving Kylar Through Their EHE Journey

Taz and Terry‘s only child, Kylar, was diagnosed with EHE in the fall of 2024 at just 21 years old. What followed was seven months of hospital stays, hard-won recoveries, and devastating setbacks. This is their story of loving and losing Kylar, and of the small, determined moments of joy that carried them through it.

Kylar had been having abdominal pain for about a month and a half. Taz and Kylar both live with endometriosis, so they assumed that was the cause and tried not to make too much of it. They finally agreed to go to the hospital on October 12, 2024.

When Taz saw Kylar’s belly, she barely recognized what she was looking at. Kylar, who was living in another state at the time, looked six or seven months pregnant from the ascites, which was eventually draining a liter a day. Draining the fluid brought some relief from the pain. The disease had mostly settled in Kylar’s liver, which had many lesions, but it had also reached their lungs and possibly their spleen and ovaries, and would eventually spread to their hip and spine.

The hospital ran test after test. Kylar’s hemoglobin was dangerously low, at 6.9, and they were tachycardic, a condition that never fully resolved. None of the doctors had heard of EHE, but the family’s oncologist had gone to college with a sarcoma specialist at Penn, and he suggested the diagnosis early on. Kylar began chemotherapy within about a week and spent much of the rest of the year moving in and out of the hospital.

By January 3, 2025, Kylar’s nausea had grown worse, and eating had become difficult, complicated further by an eating disorder they had struggled with. They became malnourished, and it took the hospital several days to recognize how serious the situation had become. The chemotherapy, their last round on December 31, also caused thrush, and one complication quickly gave way to the next. Within two weeks, Kylar was moved in the middle of the night from the cancer center to the PCU, then escalated to the ICU because they couldn’t breathe well. Struggling against the breathing apparatus, Kylar was terrified.

Kylar had spent much of their teenage years feeling like they didn’t want to live. The year before their diagnosis, they had entered a loving, committed relationship that changed everything. Now, more than anything, Kylar wanted to live. Shortly after arriving in the ICU, doctors induced a coma and placed a feeding tube. Taz and Terry feared they would lose their 21-year-old by January 16. The family had planned a cruise with 25 friends, some of whom had paid for Kylar to join, and had to cancel at the last minute. They tried to stay positive and hold themselves together, but in an impossible situation, there was little else to do but hope and keep hoping.

Kylar proved the doctors wrong again and again. They grew stronger, moved back to the cancer floor, had most of their monitors removed, and eventually had the feeding tube taken out. Taz and her husband watched their adult child relearn how to eat, drink, grab, and hold things, a process that, in many ways, felt like caring for a newborn again. It was both wonderful and frightening, and so much better than the coma days had been.

Kylar kept improving, surprising staff throughout the hospital, many of whom knew of Kylar’s case even without having met them. By April, Kylar was strong enough to move to a rehab center less than a mile away, where they stayed about a week and a half and got out of bed for the first time in four months. It didn’t last. The family returned to the hospital for about a week, then went back and forth several more times as Kylar began developing liver complications.

Throughout the journey, hospital staff tried to prepare the family for what was ahead. It turned out to be true, somewhere between a few months and a year or two, though earlier estimates had suggested it might be over by January. As Kylar’s liver issues grew more severe, staying positive became harder.

Kylar went to rehab for one more night. When Taz arrived for her shift (she and her husband split their time so that Kylar was never alone), she noticed a dramatic decline in Kylar’s condition within twenty minutes. She told the staff to call 911, and the family returned to the hospital immediately. Doctors found that Kylar’s liver was shutting down, and a yellow tint, along with test results, showed their kidneys were failing too. Taz posted a question in an EHE Facebook group for caregivers and patients, one she already knew the answer to: had anyone in the group known someone who had lived through both kidneys and liver shutting down at once? No one answered.

Kylar, sweet, sassy, funny, smart, and deeply loved, died from epithelioid hemangioendothelioma on May 16, 2025. Before passing, they donated living tissue and, soon after, posthumous tissue to the EHE Biobank. Kylar was a proud organ donor, and although cancer prevented the kind of donation the family had once imagined, Taz hopes Kylar’s gift will do two things: inspire others to donate living or posthumous tissue to the EHE Biobank, and help save lives.

“It’s an easy process, it costs the patient and family nothing, and the EHE Biobank team, led by Seth, is incredible,” Taz said. “Please consider how vital this is, no matter what stage of EHE someone is facing. The more diverse the tissue donated, the better.”

Throughout it all, Taz found steady support in the EHE Foundation and Biobank staff. “They genuinely care about people with EHE and their families, and about ending this disease,” she said.

When asked what advice Taz would give to people facing this disease, she said, “There is nothing to worry about until there is something to worry about. Try to stay calm and positive, and remember to let the people around you help you. You are not in this alone.”

Taz’s words echo what so many people affected by EHE come to learn: that fear and hope can exist side by side, that community carries you when nothing else can, and that even in the hardest moments, love shows up. Kylar’s story is a testament to a life fiercely lived and deeply loved, and a reminder of why continued research, community, and generosity matter for everyone facing this disease.

If you’re living with EHE, please consider contacting the EHE Biobank before any planned procedure.

#JustLive #NoOneFightsAlone

Kylar’s story was featured on NBC10 in Philadelphia. Watch the feature.