Clarence “Boogie” Kahilihiwa, one of 12 remaining Kalaupapa Hansen’s disease patients, died Friday a month shy of his 80th birthday.

Kahilihiwa died at Hale Mohalu at Leahi Hospital in Kaimuki. As president of the board of the nonprofit Ka Ohana O Kalaupapa, he advocated for a memorial with the names of each of the nearly 8,000 who contracted leprosy between 1866 and 1969 and were taken from their families and forcibly isolated on the Molokai peninsula.

“Yesterday was such a hard day for many of us,” said Valerie Monson, former executive director and founding member of Ka Ohana O Kalaupapa, who knew Kahilihiwa since 1989. “Boogie was one of the younger people. We were hoping he would be around for many more years.”

Born April 9, 1941, in Kalapana on Hawaii island, Kahilihiwa was just 9 years old when he contracted the disease, was separated from his family and sent in 1950 to the old Hale Mohalu hospital in Pearl City for Hansen’s disease patients.

“He was the fourth child his parents had to give up because of leprosy,” Monson said. “He chose to relocate to Kalaupapa in 1959. One of the main reasons, he told me, was he had a sister, brother-in-law and a brother in Kalaupapa. He had family there.”

Although, his sister died by the time he got there, she said.

Monson said she knew Kahilihiwa as a “very friendly, outgoing guy, always helpful,” but when the two worked together, she as coordinator and executive director of the nonprofit and he as president of the board, she saw another side to him — “just how deep he was, his thought process, how intellectual he was, and he was a strong Hawaiian rights advocate as well.”

“When we would testify at the Legislature or the land board, the rest of us would write out our testimonies in advance and read them, whereas Boogie would just talk … and he was the most powerful, most eloquent … a very strong and powerful speaker and was able to express himself so well.”

Monson said when she was a Maui News reporter in 1989, he was a young guy working full-time as a house painter at Kalaupapa. He and his wife, Ivy, were married 43 years.

He also had a strong faith in God and was a regular worshipper at St. Francis Church in Kalaupapa. Kahilihiwa was also an active member and former president of the Kalaupapa Lion’s Club.

Kahilihiwa was living in Kalaupapa until about two years ago, when he joined his wife at Hale Mohalu to help care for her.

But Kalaupapa “was home to him,” Monson said. “He wanted to live there. That’s how it is for many people. It’s become a home.”

He returned to Kalaupapa about a month ago but “was going downhill then,” said the Rev. Patrick Killilea, priest at St. Francis.

Monson said, “He knew it was going to be his final visit. The community opened their arms, and made sure he had a great few days there.”

According to Killilea, there are now 11 surviving former Kalaupapa Hansen’s Disease patients.

“With Boogie’s death, we now have 11,” five residents in Kalaupapa, six in Honolulu — four at the care home and two living on their own or with family, he said.

Sister Alicia Damien Lau has been going back and forth to Kalaupapa since 1965, and moved there full-time in 2019.

“I’ve made a commitment to be here as long as the patients are here,” said Lau, who is a nurse by profession.

She got to know Kahilihiwa over the years and particularly when she helped at the bookstore, where he greeted all the visitors.

“He was such a delight to work for and with him,” she said. “I will truly miss him. … He did come back, really to say his last goodbyes to the whole settlement,” she said.

“I was kind of glad he and Ivy were together.…Over the past two to three years, Boogie was always there for Ivy and Ivy for him. I always say, she was the love of his life.”

Lau traveled to Rome with the couple for the canonizations of Father Damien in 2009 and Mother Marianne Cope in 2012, as well as to New York for the naming of a street, “Damien Way,” in Manhattan.

“He was just a sturdy, muscular working man,” not the image of a Hansen’s disease patient, said Mary Adamski, former Honolulu Star-Bulletin reporter who covered the path to sainthood of Father Damien, the Belgian priest who ministered to those at Kalaupapa.

Despite all the hardships he went through, “he was always upbeat,” she said.

Senate Majority Leader J. Kalani English (District 7 – Hana, East and Upcountry Maui, Molokai) said in a written statement: “I’m deeply saddened by the news of the passing of Uncle Boogie Kahilihiwa. He was a dear friend and I’m fortunate to have known him for over 20 years.

“He dedicated his entire life to preserving the settlement and he worked hard to honor the dignity of every individual that was forced to relocate there.

“My aloha goes out to his wife, Ivy, the Kahilihiwa ohana and all of the patients and friends of Kalaupapa. Uncle Boogie’s presence and his big, warm smile will surely be missed.”