Rey (5) from Mechelen: 19 Operations and Unbroken Spirit

A five-year-old girl from Mechelen, Belgium, has undergone 19 operations in her young life — 16 of them on her brain — battling an extremely rare and life-threatening vascular condition. Her parents describe her as a “superhero” whose resilience continues to inspire everyone around her.

Rey Geysemans was born on February 27, 2021, one month premature, via cesarean section. Within 24 hours of her birth, doctors noticed something was wrong. Four days later, a diagnosis came from the Netherlands: Rey had a Vena van Galeni malformatie, a rare congenital vascular abnormality affecting approximately 1 in 25,000 newborns, according to Kinderneurologie.

A Fight for Survival

The condition causes all blood from the body to be drawn to one vein in the brain, which was on the verge of bursting. Her parents describe it as “in principle 100% fatal.” Rey’s heart had grown as large as her chest cavity, and other organs were beginning to fail. Only two surgeons worldwide could operate on her — one in the United States and one in Brussels.

The operation offered only a 20-30% survival chance. Rey weighed barely 2 kilograms at the time. “In the first ten days of her life, she already underwent three operations,” her mother Kathleen Claessen (39) told Het Laatste Nieuws. “Her third operation was scheduled on International Women’s Day. That really gave her girl power.”

Complications and Setbacks

In the months that followed, Rey developed hydrocephaly (water on the brain), then meningitis, followed by more brain surgeries — 16 in total. She also suffered a brain infarction (stroke), after which she became blind. “Reyke had the most beautiful big blue eyes and saw the whole world before her,” her mother said. “Since the brain infarction, they closed, and her little world became very dark.”

Rey is also deaf in her left ear and requires a cochlear implant. She has about 10 epileptic seizures per day despite being on a combination of five different epilepsy medications. She is resistant to all epilepsy medications tried.

The Broken Femurs

In May 2026, doctors took three days to discover that Rey had a broken femur. Her parents immediately asked if the other leg could also be examined, but the doctor said it wasn’t necessary because the chance was very small. A week later, when Rey received a new cast, the parents insisted on an additional scan. It was then discovered that her other femur was also broken at exactly the same place. Rey spent 11 days with a broken leg without a cast.

The fractures were likely caused by a new walking board at the care facility that wasn’t properly adjusted. Rey spent weeks with casts from her hips to her toes.

A Family’s Unwavering Devotion

Together, Rey and her parents have spent at least a year in the hospital and made about 1,000 doctor visits. Rey cannot walk, crawl, sit, or turn herself. She cannot lift her own head or grip things firmly. She will never speak or sing. “We’ve been living in hell for five years,” her parents said. “But even in hell, you have to keep going.”

“Rey is an exceptional girl,” they added. “We call her, like everyone who knows her, a little superhero. She really has the strength to live. One smile from her and our day immediately becomes much better.”

A New Challenge: The Accident

Last month, the family’s adapted car was totaled in a serious accident. Rey was in the car at the time. “It was close again — we almost lost her,” her parents said.

The family has started a crowdfunding campaign with a goal of €85,000 to buy a larger, safer, and adapted car for Rey, as well as a wheelchair lift and home modifications. “We’re not quick to ask for help,” they said, “but it’s a combination of circumstances.”

What’s Next

Rey is now 5.5 years old and has a younger brother named Jax. Her parents remain remarkably optimistic despite the relentless challenges. “Every month another disaster scenario pops up, it just doesn’t stop,” they acknowledged. “But we look forward and keep the smile on our face. We’re not people who sit around feeling sorry for ourselves — when we hear bad news, we keep going.”

For the family, each day with Rey is a victory. “We often hear: ‘Wow, hats off,’” they said. “But you do that for your child.”