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Phyllis Reusche's Children : A Mother's Struggle to Survive the Tragic Pain of Three Deaths From a Fatal Hereditary Disease

February 09, 1988|BEVERLY BEYETTE | Times Staff Writer

It was Phyllis Barrett Reusche's 24th birthday--Nov. 20, 1967--and she was feeling on top of the world. She had assessed her life and smiled in satisfaction--"I had three beautiful sons, a husband I loved, our own home. I thought to myself, 'I have everything I have ever wanted.' And I was very happy."

Five months later, she was told by her pediatrician that her two youngest sons were going to die, victims of Hunter's syndrome, a rare genetic disease, and that there was a 50-50 chance that the 8-month fetus she was carrying, if male, was also doomed.

Randall Lee Barrett, the child she was carrying when her perfect world crumbled, was buried on Feb. 13, 1981. He was 12 years old.

James David Barrett was buried on Feb. 24, 1984. He was 18.

Jared Wesley Barrett was buried on Oct. 25, 1986. He was 19.

They were too large for children's coffins, too small for adult coffins, so their father, Richard, built a proper wood coffin for each. Their grandmother lined the boxes in pale blue velvet and made little white burial suits.

For almost 20 years before that, Phyllis Reusche had lived a nightmare, watching helplessly as her sons followed their pre-destined path from beautiful babyhood to dwarfism, their bodies cruelly distorted, their minds stunted at preschool level.

They were years in which her marriage fell apart. In times of terrible tragedy, she reflects, "You either draw together or you pull apart. We pulled apart." A second marriage, to Robert Reusche, failed to survive the stress.

Today, 16 months after Jared's death, Reusche is again starting to feel a little of what she felt on that long-ago birthday. She has a handsome son who's on San Diego State University's championship surfing team and a pretty and talented teen-age daughter who was her junior high school valedictorian, is a song leader at El Modena High and will star this month in an Orange Unified High School District production of "West Side Story" at Villa Park High in Orange.

A chance meeting outside a Laguna Beach restaurant last summer with a man who had lost his wife to cancer has developed into a caring and supportive relationship. And Reusche has recently acquired a small paper goods line, the Bear Facts, for which she has big plans.

"I want to live in the future," she said, "not in the past."

Phyllis Reusche's early years were, as it turned out, something of an omen. "My first memory of my mother was of seeing her in her casket," she said, "trying to reach her and not being able to touch her."

Reusche was only 4 when her mother, riding in the sidecar of a post-World War II family motorcycle, was killed instantly when rear-ended at a stoplight. Phyllis and her sister Patricia, both riding with her, survived.

They were brought up with the help of their Danish-born grandmother until, when Phyllis was 8, her father remarried and the family moved from Long Beach to Buena Park. That was the age at which Phyllis was baptized in the Church of Jesus Christ of Latter-day Saints.

This was a formality but, four years later, after looking into other faiths, she made her own commitment to the Mormon church.

"From the time I was 12," she said, "I did everything the church told me to do and I didn't do anything the church told me not to do." No dating until 16, no drinking or smoking or wearing strapless dresses.

At Western High in Buena Park, Phyllis Petersen's religion set her a bit apart but still she was popular--head of the drill team, a homecoming court "belle." When she was a junior her boyfriend was a senior, and football captain.

Moved to Utah

She smiles and says, "A perfect story, right?"

She went on to Brigham Young University and Dick Barrett, her high school steady, visited often. They were young, they were in love--and intimacy before marriage was banned by her church, which he had joined. "It was either no sex or marriage," she said.

At the first semester break, they married. She was 19. As was typical in 1962, he continued his pre-pharmacy studies, transferring from Cerritos to BYU, and she went to work.

"We were young, we were Mormon and we wanted to have our children close together," she said. Assured by doctors that she was healthy, she became pregnant. Dick quit college and they returned to California, where he landed a good job with a large construction company. Their son, Richard Adam, was born on Nov. 18, 1963.

He was a picture book baby--healthy, happy and alert.

Eighteen months later, on May 25, 1965, James David was born. He, too, was a beautiful baby but, from the beginning, was constantly ill. And he cried all the time.

When he was 18 months old, his grandmother Barrett came to visit and said, "Something's not quite right with David. He hasn't changed since the last time I saw him."

Reusche wasn't unduly alarmed. She thought the child was probably being compared with an apparently gifted brother. Besides, her pediatrician assured her everything was just fine.

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