Houma woman beats the odds with every breath

The Courier (Houma, La.), 28th May, 2004

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Lottie

Note: Lottie Toups, the subject of this article, is now 30 years old. She and her family continue to experience the joys and overcome the obstacles of Trisomy 18 more than eight years after her graduation.

Draped in a golden gown with her hair tied back in a sparkling scarlet ribbon, 21-year-old Lottie Marie Toups of Houma smiled when she finally received her diploma Thursday.

As her name was announced as the fifth and final graduate at the School for Exceptional Children, family and friends crowded around her. Some smiled from ear to ear, and a few shed a few tears. Others handed her pink and red roses in celebration of her accomplishment.

For most, it was a day they thought would never arrive.

"This is unbelievable," said her mother, Phyllis Toups. "It's like a dream come true."

Lottie joins thousands of teenagers and young adults in the area who are graduating this month and moving forward with their lives. However, the wheelchair-confined woman, who prepares to join the adult program at Terrebonne Association for Retarded Citizens, is not like the rest.

Shortly after Lottie took her first breath on Oct. 15, 1982, doctors diagnosed her with Trisomy 18, an abnormality that causes severe mental retardation and various birth defects. The disorder, also known as Edward's Syndrome, affects one out of every 3,000 to 4,000 newborns.

Phyllis Toups, who had planned a healthy and prosperous life for her daughter, was devastated when she learned of Lottie's condition. Today, she realizes each new breath from Lottie represents a milestone and may one day re-write the history books for people with her condition.

"The doctors told us that if we were smart, we would put her in an institution and go on with our lives," Phyllis Toups said of Lottie, who functions mentally as a 1-year-old and has a child-like physique. "She was my baby, and we obviously were not going to do that to her."

An extra chromosome, specifically a third copy of chromosome 18, causes Trisomy 18.

Chromosomes, which normally come in pairs, one each from each parent, provide genetic instructions on how the body should develop. The extra genetic material interferes with those instructions, causing abnormalities in organs throughout the body.

More than 70 percent of those with Trisomy 18 die before birth, and only 10 percent of survivors live beyond their first year. Doctors predicted that Lottie would not live beyond the life-expectancy average of six months.

Despite the gloomy expectations, Lottie remains one the rare Trisomy 18 patients to live past 20. When she celebrated her 21st birthday, she became the sixth-oldest Trisomy 18 patient in the world, according to a national Trisomy patient organization.

"The fact that she has made it this long and doing the things she's doing is simply amazing," Phyllis Toups said. "She just keeps beating the odds time and time again."

Perhaps the biggest breakthrough for Lottie and her family occurred when Houma pediatrician Mae Ellen Terrebonne introduced Phyllis Toups and Lottie to TARC, an organization designed to instruct and care for the mentally challenged. Lottie enrolled in TARC when she was three months old, but with the stipulation that Phyllis Toups would treat Lottie as though she will live forever.

"No one had ever said that before, no one," Phyllis Toups said. "That was the day I stopped planning Lottie's funeral and started planning her life. There was now hope, a real hope to move on and value the things in Lottie's life and my life."

But newfound hope did not come without a few scares. When Lottie was six months old and recovering from pneumonia, she had a severe seizure.

"It didn't look good at the time," Phyllis Toups said. "We thought we would maybe lose her because she didn't seem be able to come out of it. She wouldn't eat anything or do anything."

Phyllis Toups called the Rev. Gerald Hayes, pastor of St. Anthony's Catholic Church in Bayou Black, and asked him to pray for Lottie and administer the last rites.

But when the family and Hayes arrived at her bedside, Lottie was sitting up on her own and eating. "We were all shocked, because we thought that was it for her," Phyliss Toups said. "God truly answered our prayers."

Phyllis Toups and her family suffered another setback when a doctor working with Lottie said the little girl would lead a useless life.

"She told me, ëYou know those kids that are strapped in wheelchairs and drool everywhere? That's what you got mom, and don't expect anymore than that.' It was so upsetting," Phyllis Toups said. But the despair didn't last long. With a growing hope that Lottie would live longer than expected, Phyllis Toups tried to teach Lottie to drink from a bottle, instead of through a tube.

A TARC instructor guaranteed she could teach Lottie to drink from a cup in about a month. The project was successful. Soon after, Lottie learned to eat baby cereal and soft food from a spoon. Phyllis Toups said the first years of Lottie's life were the most challenging, but since then Lottie has only required occasional visits to the doctor. She has been admitted to the hospital once during the past 14 years.

Lottie did have another scare late last year when she suddenly stopped eating. Doctors wanted to feed Lottie through a tube after she failed to respond to medication but, as she did years earlier, Phyllis Toups refused.

"We decided that we wanted Lottie to have a quality of life, not simply a quantity of life," Phyllis Toups said. "Feeding through the tube is good for some, but it would have made her miserable."

Lottie's doctor told Phyllis Toups about medicine from New Zealand she could order through the Internet -- drugs not available in the United States but pending approval by the Food and Drug Administration. Phyllis Toups ordered the new medicine, and it worked. Lottie began eating, drinking and laughing again and has been her old self since, Phyllis Toups said.

Phyllis Toups said raising Lottie has been a challenge, but through it all she's learned to appreciate the simple and more important things in life.

"Lottie has taught me patience and unconditional love," said Phyllis Toups, TARC's executive committee president. "Because of her, I got involved with TARC, a place that opened up many opportunities for me to serve others and learn about the many handicaps. I've gotten so much from that."

When Lottie turned 18, her biological father stopped paying child support, cancelled her medical insurance and forfeited his parental rights, Phyllis Toups said.

Following a series of legal proceedings, her stepfather, Ron Toups, adopted Lottie before she turned 19 and became her legal father.

"Ron didn't hesitate at all to make the decision. He was amazing," Phyllis Toups said. "In my heart, I always knew she was already his daughter, and she knew him as daddy. But now it's official and she has all she needs to continue to live a long and brilliant life. One that will inspire people every day."

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