Marjorie Lattimer, 92, kisses her daughter, Shirley,72, on the forehead. Shirley was born with PKU, a genetic birth disorder, which can cause problems with the central nervous system. By Sarah Moore
Marjorie Lattimer, 92, has spent a lifetime caring for her daughter Shirley Lattimer. Shirley was born with phenylketonuria or PKU, a genetic birth disorder that stunts the development of the central nervous system.
By Sarah Moore & Jon Offredo
For the Sunday Gazette-Mail
Editors Note: This is the first in a series of multimedia projects from the West Virginia Uncovered project at West Virginia University.
Click here for more stories from West Virginia Uncovered.
Click here for a photo slideshow for this story.
SPENCER, W.Va. -- Marjorie Lattimer leans on her metal cane outside her daughter's house. The storm door opens slowly and a high-pitched yelp pierces the air. Lattimer enters the house as quickly as her recently broken hip will allow.
"Mommy's fixing it. Mommy's fixing it," she croons to her daughter as she unpacks snacks.
Marjorie is 92. Her daughter, Shirley, is 74.
Shirley's wispy white hair gleams in the sunlight as she rests cross-legged in a medical chair placed in front of the television. She rocks back and forth, waiting for her mother to sit beside her.
Lattimer's two children were born with phenylketonuria, or PKU, a genetic birth disorder that stunts the development of the central nervous system. PKU left her children unable to care for themselves and perform basic tasks. Her son, Roger, was able to feed and dress himself, but Shirley cannot.
Dr. Marybeth Hummel, professor of pediatrics at West Virginia University's Health Sciences Center, said patients with untreated PKU, like Shirley, are uncommon these days thanks to remedies at birth. Each year there is maybe one child born with PKU in the state, she said. With proper care and diet, those born with PKU can live a normal life.
"The fact that she has done so well is because she has been taken care of and followed up on," Hummel said.
Five weeks before Lattimer gave birth to Roger, her husband walked out of their lives. For the almost six decades since then, Lattimer has been alone in her fight for her children and their rights. Roger died two years ago at 59.
Throughout her life, Lattimer's kids have kept her on her toes. She figures God has kept her alive thus far, so she can see her children are cared for.
"Shirley is getting to the age where the good Lord will take her pretty soon, I imagine, and I hope so," she said. "I hope so, before I die. I've always prayed that he'd take both of them before he took me."
'I thought I was going to die'
Lattimer married at 17. At 18, she was pregnant with Shirley. She, her husband and the doctors thought the baby would be healthy and normal. At that time, PKU was unknown.
After the baby was born, the doctors knew something was wrong.
Hummel said about one in 20,000 babies are born each year with PKU in West Virginia. In the United States, only about one in every 10,000 to 15,000 babies is afflicted with PKU. Thanks to modern treatment, severe effects are rare.
"All of the doctors we took them to didn't know a thing about it," Lattimer recalled.
Almost 14 years after Shirley was born, Lattimer became pregnant again, with Roger. She was excited to have a baby boy. But after his birth, the doctors told her there was a problem. She had given birth to a second child with the disease.
"I thought I was going to die," Lattimer said. "I was sitting in a chair holding him, and after I went to the doctor and he told me something would be wrong with him I was so upset. And there was a voice [that] come over my head and said you'll be taken care of -- and I have been."
After Roger's birth, Lattimer found herself unable to care for two children with profound needs. She sent Shirley to the state hospital in Huntington. It was one of the hardest decisions she's ever made.
By Sarah Moore & Jon Offredo
For the Sunday Gazette-Mail
Editors Note: This is the first in a series of multimedia projects from the West Virginia Uncovered project at West Virginia University. Click here for more stories from West Virginia Uncovered.
Click here for a photo slideshow for this story.
SPENCER, W.Va. -- Marjorie Lattimer leans on her metal cane outside her daughter's house. The storm door opens slowly and a high-pitched yelp pierces the air. Lattimer enters the house as quickly as her recently broken hip will allow.
"Mommy's fixing it. Mommy's fixing it," she croons to her daughter as she unpacks snacks.
Marjorie is 92. Her daughter, Shirley, is 74.
Shirley's wispy white hair gleams in the sunlight as she rests cross-legged in a medical chair placed in front of the television. She rocks back and forth, waiting for her mother to sit beside her.
Lattimer's two children were born with phenylketonuria, or PKU, a genetic birth disorder that stunts the development of the central nervous system. PKU left her children unable to care for themselves and perform basic tasks. Her son, Roger, was able to feed and dress himself, but Shirley cannot.
Dr. Marybeth Hummel, professor of pediatrics at West Virginia University's Health Sciences Center, said patients with untreated PKU, like Shirley, are uncommon these days thanks to remedies at birth. Each year there is maybe one child born with PKU in the state, she said. With proper care and diet, those born with PKU can live a normal life.
"The fact that she has done so well is because she has been taken care of and followed up on," Hummel said.
Five weeks before Lattimer gave birth to Roger, her husband walked out of their lives. For the almost six decades since then, Lattimer has been alone in her fight for her children and their rights. Roger died two years ago at 59.
Throughout her life, Lattimer's kids have kept her on her toes. She figures God has kept her alive thus far, so she can see her children are cared for.
"Shirley is getting to the age where the good Lord will take her pretty soon, I imagine, and I hope so," she said. "I hope so, before I die. I've always prayed that he'd take both of them before he took me."
'I thought I was going to die'
Lattimer married at 17. At 18, she was pregnant with Shirley. She, her husband and the doctors thought the baby would be healthy and normal. At that time, PKU was unknown.
After the baby was born, the doctors knew something was wrong.
Hummel said about one in 20,000 babies are born each year with PKU in West Virginia. In the United States, only about one in every 10,000 to 15,000 babies is afflicted with PKU. Thanks to modern treatment, severe effects are rare.
"All of the doctors we took them to didn't know a thing about it," Lattimer recalled.
Almost 14 years after Shirley was born, Lattimer became pregnant again, with Roger. She was excited to have a baby boy. But after his birth, the doctors told her there was a problem. She had given birth to a second child with the disease.
"I thought I was going to die," Lattimer said. "I was sitting in a chair holding him, and after I went to the doctor and he told me something would be wrong with him I was so upset. And there was a voice [that] come over my head and said you'll be taken care of -- and I have been."
After Roger's birth, Lattimer found herself unable to care for two children with profound needs. She sent Shirley to the state hospital in Huntington. It was one of the hardest decisions she's ever made.
"That about killed me," she said.
While Shirley was at the hospital, Lattimer raised Roger at home. She worked as a baby sitter around the Charleston area. She was a sitter for her niece's children and for prosperous families in South Hills. She made around $15 a week and saved her money.
"I was saving for a long time," she said. "It's hard when you have to make your own living."
When Roger was 14, Lattimer decided to buy the Dunbar apartment building where they lived. She figured if her landlady could do it, she could, too. The down payment was around $12,000, which her brother helped her meet.
For several years she owned the building and rented out rooms, until she sold it to her great-nephew for a little more than twice the price she paid.
Roger began to suffer seizures at 17, and Lattimer decided to commit him to Spencer State Hospital. She had Shirley transferred there next.
About a year after they were transferred, Lattimer bought a house on Church Street in Spencer, across the street from the hospital. She visited every day and was given a key to the front gate.
A mother's love
One day, Lattimer heard Gov. Jay Rockefeller announce Spencer State Hospital's closure on the news.
According to press accounts, the now U.S. senator, first announced the closure in 1982, six months after saying the facility was there to stay.
The hospital was finally closed in 1989.
"I thought it was awful, and I've never been able to hardly look at him [Rockefeller] since," she said. "He don't know what trouble is. He was born with a silver spoon in his mouth."
The hospital was demolished and replaced by a Wal-Mart. Lattimer still lives across the street.
While the decision was being pushed through, Lattimer and her great-nephew, Roger Wolfe, established a trust and bought a house for Shirley and Roger. Lattimer hired professional caregivers to help her with their care.
Every week, Lattimer visits her children, catching a senior's bus from her home a few miles away in Spencer.
During a recent visit, Lattimer stood behind the partition in Shirley's kitchen. She mashed a banana in a ceramic bowl.
Shirley has no teeth and must be spoon-fed.
At one time, Lattimer came over and made meals for her children, but stricter guidelines allow her to bring only prepackaged snacks.
Shirley yelps and jolts as Lattimer leans in to feed her. Shirley lets out a satisfied sound as her mouth closes around the stainless steel spoon.
Minutes later, when Lattimer gets up to head to the kitchen, Shirley shrieks as her mother moves away.
Lattimer leans over and comforts her daughter, something she's been doing her whole life.
"I said that I love my kids as much as anybody loves [their kids] -- and I think a little bit more," she said.
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