By Sarah Moore & Jon Offredo | 10/23/09
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 complicates 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. Her daughter Shirley cannot.
Dr. Marybeth Hummel, professor of pediatrics at West Virginia University’s Health Sciences Center, said that 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, someone with PKU can live a normal life span.
“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 she gave birth to Roger, Lattimer’s 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 when he was 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.”
“Poor little things”
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 that there is about one in 20,000 babies born with PKU a year in West Virginia. In the United States, only about 1 in every 10 – 15 thousand 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 said.
Almost 14 years after Shirley was born, Lattimer became pregnant again, with Roger. She and her husband were excited to have a baby boy. 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.
$15 a week
While Shirley was at the hospital, Lattimer raised Roger at home. She worked as a babysitter around the Charleston area. She was a sitter for her niece’s children and for prosperous families in the 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 silver spoon
One day in 1989, Lattimer heard Gov. John D. Rockefeller on the news announce Spencer State Hospital’s closure.
“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.”
When the hospital closed that year, Lattimer and other parents and family members traveled to Charleston to lobby against the hospital’s closure. It did no good. The hospital was shut down.
“We were just trying to stick up for our own rights, but we didn’t win,” she said.
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. Over the years, Lattimer and Wolfe allowed other patients to live there too. Right now, her daughter Shirley is the only resident.
Every week, Lattimer visited her children. She still goes to this day, catching a senior’s bus every week.
During a recent visit, Lattimer stands behind the partition in Shirley’s kitchen. She mashes a banana in a ceramic bowl.
Shirley has no teeth. She must be spoon-fed.
At one time, Lattimer came over and made meals for her children, but stricter guidelines only allow her to bring 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 Lattimer gets up to head to the kitchen. She rises from the chair next to her daughter. Shirley fiercely yelps and shrieks as her mother moves away. She has a pained expression on her face because she thinks her mother is leaving.
Lattimer leans over and comforts her daughter, something she’s been doing her whole life.
“I say about all of the time when I said that I love my kids as much as anybody loves them – and I think a little bit more,” she said.
Editor’s note: Shirley Lattimer passed away shortly after the publication of this story.
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