“He will be dead by the time he’s 18. Take him home and love him.” With those words, a doctor threw Lori (Watkins) Ware (MBA ’89) into the fight of her life: The fight for her son’s life.
Just weeks after Hurricane Katrina struck the Louisiana coast, Lori’s 3-year-old son, Joseph, was diagnosed with Duchenne muscular dystrophy (DMD), an incurable genetic disease that destroys a body’s muscles. It is fatal; children with Duchenne typically die in their late teens.
At the very moment Lori received what she calls “the death sentence on my baby,” she had the instinctive reaction that would guide the life.
She fought back.
She challenged.
She told doctors, “That’s not good enough.”
Today, Lori believes she can help her son to “avoid the wheelchair,” he “will grow to be a man.” But her battle is one that entails buying her son, staying on top of worldwide research efforts, and, at the all, massive amounts of prayer and faith. She frequently tells people friendly Southern accent, “You know as well as I do that God’s gonna care of this.”
So far, God seems to be fulfilling Lori’s expectations.
Family roots
Lori was raised in West Monroe, La., a town of approximately 150,000 people about 300 miles northwest of New Orleans. She’s married to Joe Ware, whom she’s known since high school, and she has two daughters—Hannah, 13, and Mallori, 12—in addition to son Joseph (they call him ‘Seph’ because there are already so many Joes, Joeys and Josephs in the family).
Monroe is a small town built around the Ouachita River. The humid climate supports enormous trees and plants with leaves the size of car tires. Lori’s home rests on eight acres of a 20-acre plot that’s been in the Watkins family for generations. Her parents live next door on the same plot of land.
When Seph passed his first birthday and months kept ticking by with no sign of him walking, Lori became concerned. Everyone around her kept saying he was fine and that she should relax. But, exhibiting a trait that would later guide some of the biggest decisions of her life, Lori ignored the people who “thought I was crazy” and took Seph to physical therapy when he was 15 months old.
Physical therapist Melanie Massey agreed that Seph was developmentally delayed and began strength training. The therapy seemed to work and, by the time Seph was 17 months old, he was walking. He could not run, but Lori believed that would come.
Then one day Joe was wrestling with Seph and noticed something: When Seph was on his back and Joe would push his legs up toward his head, Seph would grimace. Joe couldn’t get his son’s legs farther than a 90-degree angle without causing Seph pain.
Lori thought that was odd, so a few days later, she mentioned it to the doctor.
“He said to me: ‘You don’t normally see that in a child unless he has muscular dystrophy, which he doesn’t, but you might want to ask your physical therapist about it.'”
Two days later, Lori saw Massey, who confirmed that she saw signs of the disease in Seph. Lori learned that there was a simple blood test for the disease, so on Oct. 5, 2005, she and Joe took Seph in for the test. They believed the results would take several days.
Two hours later, the Wares learned that their son had muscular dystrophy.
By this time, Lori had done enough research on the Internet to know the disease has no cure and can be fatal. She knew that Seph could have one of two main types of muscular dystrophy: Becker’s, a slow-progressing version of the disease in which boys grow to become men and even into old men; and Duchenne, a fast-moving, highly lethal form of the disease in which boys typically die in their teens.
Seph’s blood test only revealed that he had muscular dystrophy, not which kind. For the rest of the story, Seph needed a DNA test. The next day, Joe and Lori took Seph in for that test, but those results would take weeks.
The diagnosis
Boys with Duchenne or Becker’s muscular dystrophy—very few girls get these types of MD—have a problem with their body’s production of dystrophin, the ‘glue’ that holds muscle cells together. Boys with Becker’s muscular dystrophy produce small amounts of dystrophin, so their bodies can typically maintain functionality for much longer. Boys with Duchenne, however, produce no dystrophin, which causes such rapid muscle deterioration that they are usually in wheelchairs by the time they turn 9. As the disease progresses, they lose the use of their arms, and then their respiratory and cardiac muscles deteriorate, typically causing death before age 20.
During those painful weeks of waiting for DNA results, Lori recalls a co-worker repeatedly saying, “Lori, let’s just pray it’s not the ‘D’ one. You’ll be OK if it’s not the ‘D’ one.”
On Oct. 24, Lori and Joe went to the clinic to hear the news: Seph had Duchenne.
“I was set up for Becker’s because the doctor kept saying it had to be Becker’s, so when he told me Duchenne, I crumbled,” recalls Lori, who still cries at the memory. “I said, ‘What does that mean?’ and he said, ‘He will be dead by the time he’s 18.'”
The Wares asked what they could do for Seph. “He said, ‘Take him home and love him.’ He gave us no options, no standard of care.”
Lori looks back on that moment as a common snapshot of what many parents face when they learn that their son has DMD. One mother told Lori that their doctor said their son would be “short and fat and he will die.”
“And then doctors get mad when they have a crying mama in their office,” Lori says.
Duchenne Muscular Dystrophy: The Facts
Duchenne muscular dystrophy (DMD) is the most common fatal genetic disorder diagnosed in childhood, affecting approximately 1 in every 3,500 live male births (about 20,000 new cases each year). Duchenne can be passed from parent to child, but approximately 35 percent of cases occur because of a random spontaneous mutation. Because the Duchenne gene is found on the X-chromosome, it primarily affects boys. It occurs across all races and cultures.
DMD results in progressive loss of strength and is caused by a mutation in the gene that encodes for dystrophin. Because dystrophin is absent, the muscle cells are easily damaged. The progressive muscle weakness leads to serious medical problems, particularly issues relating to the heart and lungs.
Although there are medical treatments that may help slow its progression, there is currently no cure for Duchenne.
—Parent Project Muscular Dystrophy
Although muscular dystrophy is the most common lethal genetic childhood disease, there is so little awareness of it that even doctors who should be experts in the field lead families to believe there is no hope.
But Lori believes there is hope.
Faith heals
The primary source of that hope is faith in God. Raised in a Baptist Church—her great-grandmother was a charter member—Lori frequently discusses God’s power to deliver a miracle for Seph. Barring a miracle, Lori says she can accept that Seph will be in heaven if he dies before her, though she cries every time she considers it.
“It’s a God thing,” she says. “Without my faith, I would have nothing. No hope.”
Joe also relies on his strong faith and says he tries to enjoy every day without worrying about what the future may hold.
“That boy gives me such joy today, and he does every day,” says Joe, tearing up. “He makes me so happy now. I don’t want to be sad. I want to be happy … There will be plenty of time to be sad.
Lori also found hope through the Parent Project Muscular Dystrophy Web site and its founder, Pat Furlong.
After learning of Seph’s “death sentence,” Lori e-mailed the organization. Within an hour, Furlong herself called Lori.
Furlong lost her two sons to Duchenne within six months of each other in the 1990s. She, too, had faced a doctor who told her there was no hope for her sons and, she says, at that moment, “I turned into a terrorist.”
“I’m usually a very reserved, consistent person,” says Furlong. “But I lost that side of myself that very day. I pulled that doctor by his tie up to my nose and I said, ‘If I have to choose today who lives and dies, you are on the top of my list.'”
The doctor told Furlong she was “overreacting,” to which she responded, “I will overreact about my children until the day I die.”
She’s held to that promise.
Today, Furlong is the executive director of the Parent Project, an organization she established when she realized that research into her sons’ disease was sparse at best, that researchers weren’t communicating with one another and that there was no standard of care for boys with DMD. In her quest, she traveled the globe on her own money, lied to get into doctors’ offices, tricked renowned scientists into chairing research panels, and demanded that experts come up with options for “these lost boys.”
Parent Project Muscular Dystrophy now is a multimillion-dollar fundraising, awareness-building, advocacy and research-generating organization with its finger on the pulse of the field’s hottest research and best doctors.
But when Furlong called Lori, it was one mom to another.
“The first words out of her mouth were, ‘How are you?'” Lori recalls. “Well, my baby had just received a death sentence. I dissolved.”
In that initial conversation, Furlong quizzed Lori about Seph’s DNA, his genetic codes and her plans for treatment. She also gave Lori hope.
“Pat said, ‘You need to know that your son will grow to be a man,'” Lori says. “She told me that there was a lot of research coming down the pike. It was the first time I had heard that.”
Furlong asked Lori where she was taking Seph for treatment.
Lori simply said, “You tell me to go anywhere in the world and I will go. Where do I take my baby?”
Furlong recommended Dr. Brenda Wong at Cincinnati Children’s Hospital Medical Center. Lori immediately booked an appointment and made travel plans. But again, she had to ignore people around her. Just as when she first took Seph for physical therapy, Lori continued to face doctors and acquaintances in Monroe who thought she was grasping at straws.
“People kept looking at me like I was crazy,” Lori remembers. “One doctor told me that Cincinnati would just waste my money and use my son as a guinea pig.”
But Lori was undaunted and in December 2005, she and Joe took Seph to see Wong.
Wong is credited with establishing and running one of the country’s most progressive DMD medical centers. She has gathered experts from 17 specialties—ranging from cardiology and neurology to endocrinology—to comprehensively treat each of her now 500-plus patients.
“It’s the most amazing place of hope,” says Lori. “When I’m there, I feel like it’s going to be OK.”
Both Wong and Furlong believe that there will be a treatment for DMD patients, but they differ in how soon they think it will come. Wong points to several drugs that are in or near clinical trial phases, and she believes there may be a useful treatment—but not a cure—within four to five years.
Furlong, however, seems to believe a treatment is further away.
“I believe that, within the next three to four years, doctors will be able to rule some things out and rule some things in.”
Ruling in and ruling out is not a cure, and to Lori, that’s just not fast enough for Seph.
Lori’s mission
Seph, who is 6, is about the size of a 4-year-old, but what he lacks in height, he makes up for in a hyper-speed imagination. Coming home from an errand with Mom, he races inside, dons his Superman cape, races back outside in his socks, climbs into his kid-size, battery-powered, Caterpillar-brand truck and does laps around the driveway.
If Seph sees a pen and paper, he is physically unable to stop himself from drawing space aliens.
His gigantic brown eyes seek attention from everyone in a room as he explains the role that each person will play while he “saves the village from the evil bad guy space monster aliens.”
It’s unbearable, Lori says, to think of him in a wheelchair, to think of him unable to feed himself, to think of him unable to breathe.
“Most days, it’s easy to just go along in a routine and forget the bigger picture,” Lori says. “But then reality slaps me in the face and washes over me like a bad smell.”
So, in addition to her duties as mom, public school teacher and lifesaver, Lori is an awareness-builder.
“Part of getting Seph the best medical treatment that I can is through building awareness,” she says. “The reason 70 percent of pediatric cancers are curable today is because people raised awareness.”
“I cannot be passive,” she adds.
Lori attends annual Parent Project conferences, where she makes it a mission to meet the doctors who are working on treatments for DMD. She has made business cards with Seph’s picture on them and hands them out to the doctors.
“This is my son, Seph,” she tells them. “He is the reason you must keep working for a cure.”
Lori also goes to Washington, D.C., to work with Parent Project lobbyists and to speak with representatives from every state.
She has helped raise money for other families facing the disease. She once approached a nonprofit in her hometown to raise money for a Romanian family who wanted to take their son to Wong. She raised $11,000 from one meeting and two radio broadcasts.
“That was God,” she says, brushing off any credit for herself. “You don’t raise $11,000 from 30 minutes of effort without God’s help.”
While Lori’s journey with DMD is extraordinary and, by her own measure, “a nightmare,” she also lives the life of a typical mom. She teaches special education at West Monroe High School. Hannah and Mallori have diverse interests and, of course, no driver’s licenses, so Lori is their chauffeur. Seph attends weekly physical therapy, and Lori helps care for her ailing dad.
Twice a year, Lori takes Seph to Cincinnati. During her most recent visit, she received news that cemented her faith in a miracle.
Seph surprised Wong. He is actually improving. Lori maintains a Web site about Seph, and, from Cincinnati, she wrote that Wong was “very impressed with how well Seph is doing. His time getting off the floor with no hands DECREASED by one second … to most of you that may not be a big deal, but for us it is HUGE!!!”
She went on to explain that Seph would begin taking human growth hormone (HGH) and that “Dr. Wong really believes that as good as Seph is doing now, with the addition of the HGH, it will be YEARS before we see any significant DMD signs. YEAH, YEAH, YEAH, THANK YOU LORD!”
Buying time
Lori admits that all of her efforts amount to one goal: Buying time for Seph. The longer she can keep him walking, the more of a chance he will have when the cure is discovered.
Until then, Lori believes Seph should get to be a normal 6-year-old boy, as much as his body allows. He recently played on a T-ball team that took the league championship. As her little boy shuffle-ran into home plate and turned to give her two thumbs up, Lori’s blue eyes welled up and she said, simply, “Isn’t that beautiful?”
Then, she sighed, believing each moment was proof of her favorite scripture—Jeremiah 29:11.
“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”