Website memorializes boy

Jennifer Kugies, the mother of Reef Kugies, a 9-year-old boy who died Sept. 23 of complications from foot surgery, has created a website in his memory. New fundraisers also have been announced to raise money for his memorial fund.

Reefkugies.com contains a blog, photos, memorial fund information and ways for people to get in touch with Reef’s family.

Reef was born with Schizencephaly, an extremely rare developmental birth disorder characterized by clefts on one or both sides of the brain, his mother said.

Depending on which side of the brain the cleft or clefts may be, they can cause weakness or paralysis in one or both sides of the body.

In Reef’s case, the cleft was on the right side, so his left appendages were affected, Jennifer Kugies said. He couldn’t use his hand very well, and his foot was beginning to turn inward, so his family opted for corrective foot surgery. Reef died soon after the routine surgery; the cause of death is still under investigation.

People with Schizencephaly often suffer seizures, but Reef never had any, his mother said.

The majority of children with the disease don’t live to age 20, she said, but their odds increase the longer they go without having a seizure.

Jennifer Kugies’ family celebrated every step of Reef’s development, from learning to walk to saying his first words.

“Those are just like normal milestones, but for us, those were all huge miracles,” she said.

“Every single thing that Reef did was just amazing to me. It got to a point where he was doing everything he was supposed to be doing. I didn’t think there was a possibility that we could lose him. … When it actually happened, it was just sudden, and tragic.”

A memorial service for Reef will be at 3 p.m. Sunday at the Environmental Nature Center, 1601 E. 16th St., Newport Beach.

Reef’s ashes will be sprinkled in Hawaii, Jennifer Kugies said.

Reef was told shortly before his surgery that he was going on an imaginary vacation, and was asked where he would go.

“Hawaii,” he said, with a big smile.

Reef loved traveling, his friends and family, and soccer. He has been remembered by family and friends as a child with an uncommonly mature level of empathy and leadership, who touched everyone he knew.

“I think he made more of an impact in his short nine years than some people do in a lifetime,” Jennifer Kugies said.

Getting Involved

The mother of Reef’s best friend Daniel Curtis, Nazy Curtis, and her ex-husband Robert Curtis will be holding a cut-a-thon from 10 to 5 p.m. Oct. 11 and 12 at her Newport Beach salon, d’Orsay, the Art of Hair, 240 Newport Center Drive, Suite 107. All proceeds will benefit the memorial fund.

“Reef was a big USC fan. After he died, we went over to the house and Jennifer gave Daniel Reef’s favorite USC shirt,” said Nazy Curtis’ boyfriend, Sebastian Heiden. “It was very moving.”

Daniel has been trying to raise money for a memorial bench overlooking the ocean and Catalina Island, where Daniel and Reef recently vacationed. He will be selling lemonade today after school about 3 p.m. at Mariners Elementary, 2100 Mariners Drive.

“When we heard the news that Reef had died, we were devastated,” Nazy Curtis said. “It broke our son’s heart. ... Reef was a wonderful child, and we want to remember him in a special way.”

T-shirts in memory of Reef also are available for $15 each.

For more information, call Nazy Curtis at (949) 322-9555. To request a T-shirt, e-mail the sizes and quantities desired to [email protected].