Never Say Quit. For Karla Hurdle, it would seem that the end of every day is a gift, the beginning a mystery. This strong woman faces challenges that most of us cannot imagine. She stands in the glare of the public spotlight with her husband, Colorado Rockies manager Clint Hurdle, and she faces an intensely private struggle as she raises her adorable children, one of whom is afflicted with a daunting illness. Through it all, she must stand tall, keep smiling, keep moving. Amazingly, she does. The Hurdles’ daughter, Madison, was born with Prader-Willi Syndrome, a chromosomal disorder that affects one in 12,000 babies. Little was known about the disease until the past few decades, and even today it may be misdiagnosed or left untreated.
“A common misconception is that babies born with this syndrome are preemies at birth. Madison was only two weeks premature, and she was a sleepy baby, which we did not perceive as unusual. But we were lucky. We had a doctor who thought something just wasn’t clicking, and he determined that she had Prader-Willi,” Hurdle says.
Her voice drops a bit as she recalls the internal struggle to accept the fact that her precious child was born with a birth defect. “When was the last time you heard about a cure for any type of birth defect? So our whole focus is on making the quality of these kids’ lives better, and I truly believe that kids born with the defect in this generation have it so much better than just a few years ago,” she says. Hurdle’s mission, as she sees it, is to educate as many families as possible about the disorder, so that others may finally recognize how prevalent and serious it is: “For so many years, many of the kids born with Prader-Willi were mistakenly diagnosed as having Down Syndrome, because the symptoms are similar,” she says. “Today, there are many kids, now in their early 30s, who have just been diagnosed correctly. These kids always struggled with their weight, were the slowest in their class, and had all the symptoms of Prader-Willi. Yet the disease was only really discovered 37 years ago, so there is not a great deal of data that has historically been available to help physicians.”
Karla HurdleHurdle and her husband now work closely with the Prader-Willi Syndrome Association, the national headquarters tasked with spreading information and boosting awareness of the illness. Their efforts to educate are significantly enhanced by their public exposure, a platform Hurdle cherishes, although her husband has typically been the public persona in most media coverage. Hurdle says the couple’s determination to speak publicly about Madison’s struggles has brought understanding and relief for many families. “It’s not at all uncommon for the national headquarters to get a call from a parent who read an article that discussed our struggle and who then called their pediatrician, who confirmed their child has the syndrome,” she says. Her passion for her kids and her family is nothing short of breathtaking. Perhaps it’s because she’s married to the man who helped propel the Colorado Rockies to the World Series just one year ago. Perhaps her daughter’s illness brought out some iron will to make sure others could enjoy the love, understanding and quality of life she is determined to provide her child. Perhaps she just doesn’t want to see one more baby fall through the cracks, wrongly diagnosed, and destined to lead a life that could be ever so much sweeter.
“This whole experience has been a process,” she admits. “First, we had a hard time becoming pregnant and went through all the hoops. When we finally became pregnant and had the baby, it was not at all what we had envisioned. It was like we raised our hands and had to go right to the front of the line, when we didn’t feel it was our turn. But we went through the grieving process, and we survived it.” It was those early days that seem to stand out the most for Hurdle, who thoughtfully recalls the number of times she would simply look at her husband and say “this really stinks.” It truly is difficult to imagine the pain of the parent who understands her child is somehow different and that her life is not going to be an easy road to travel. Shortly after she gave birth to Madison, the doctors placed the baby in the newborn intensive care unit. “It’s not what I signed up for. You leave the hospital and expect to take the baby home with you. Instead, I’d get to the hospital and remain there all day until around 9 p.m., go home to try to get some sleep and start all over again,” she recalls. “It was overwhelming. During pregnancy, everyone tells you it doesn’t matter what sex the baby is, as long as it’s healthy. That’s really all anyone wants,” she sighs.
In addition to learning her infant daughter had a strange and life-altering affliction, Hurdle was forced to deal with the daily demands required of the wife of a man at the helm of a professional sports team. “Clint was given the manager’s job in April, and Maddie was born in August. Clint was traveling a lot during my pregnancy, but he was home for the delivery. Then he had to leave again. I probably began the grieving process quicker than Clint, because I lived it and saw it every day. Clint was not there to deal with it as much, which in some ways made it harder on him. In any type of situation like this, the only way to get through it is to deal with it one day at a time. You can’t sit around wondering will she go to the prom, drive a car, go to college? Our doctor told us early on that it would be useless to ask those questions. We have to let Madison tell us her own story in her own time,” she says. After Madison was diagnosed, Hurdle began reading all the information that was available on the Internet. Unfortunately, most of the material was archaic and had little bearing on the new treatment options and progress that has been made. “It was all doom and gloom, and many of the kids referred to were living in homes because their families could not take care of them,” she says. “But we can do it differently with Madison. We can push her, encourage and help her. She goes to occupational, physical and speech therapy. She gets massages and compression on her joints. She takes medicine to control her eating.”
Karla HurdleSuch intense dedication to a child must at some point take its toll on the caregiver. “I really didn’t realize how much it took out of me until Madison was a little older,” Hurdle admits. “I would take a break and go to Starbucks or out for a short walk. I’d be gone for an hour and I’d wonder how I’d spent it. My mother’s role was to be the nurturer, to take care of the kids. My family had eight kids, and I see now that my mother got what was left over. When I take time for myself, it’s hard to feel I’m not supposed to be doing that. But we all need a break, and it benefits me as a person, my marriage and my family.” Hurdle says that illness in any family is bound to impact a marriage at some level. “When you have children, you are no longer the center of each other’s focus, and when you have a sick child, you can multiply that times three,” she says. “Clint and I have said we would not be as far along in our relationship were it not for Madison. She has taken us places we never thought we’d go.”
And it’s not just the Prader-Willi that challenges the couple. Five years ago, Madison began having epileptic seizures and had to be put on special medicine to control the attacks. The first one, she says, occurred while she was shopping with Madison at The Gap, and her husband was away at a game. Over the next 30 hours, she had 15 more seizures. Now seizure-free for three years, Madison must continue with regular checkups with a neurologist. Then last year, she was hit with Kawasaki disease, which affects one in 24,000 people. Those who contract it are typically male, under the age of 9, and of Asian descent. Symptoms are similar to scarlet fever, including extreme lethargy and a rash over the entire body. “Antibiotics were not helping, and we had to quarantine her because we didn’t know where it originated or what was causing it,” recalls her mother. But again, the Hurdles got lucky and found a doctor at Children’s Hospital who made a fast and accurate diagnosis. Left untreated, Madison would have faced severe complications in later life, mostly heart-related.
One of the more difficult adjustments Hurdle has had to make was in giving up her own career, working for a CPA firm. “There are times when I greatly miss the interaction of not working, the adult conversation and stimulation. But I don’t miss the April tax season and not being able to see more of Clint when he’s busy with Spring training. I sometimes feel like I’ve lost my edge, and I never thought I would not work. But priorities change, and that’s the way it is,” she says. Karla HurdleHurdle chooses not to travel with her husband to many of the games, preferring to keep the kids at home. Between dealing with the daily rigors of Madison’s life and balancing that with her active 3-year-old son, Christian, she keeps very busy planning an annual golf tournament that raises money and awareness of Prader-Willi Syndrome. The annual tournament is always a sellout as well as a lot of fun for participants. Clint Hurdle is always on hand to participate as a golfer, and to encourage players to “beat the manager.” Another hole may require players to don a catcher’s mask and gear before teeing off. “If you’re a hard-core scratch golfer, this tournament may not be for you,” Hurdle says. “It’s all about having fun, and you’ll have a smile on your face at the end of the day.
“I don’t have Clint’s platform, but this is my niche,” she continues. “My piece of the pie is being able to raise money for the local and national chapters.” Her efforts are not insignificant. In the tournament’s first year, $37,000 was raised. Last year, that number had grown to $94,000. Hurdle’s newest endeavor is to raise money to open a group home for Prader-Willi kids so that they may live independently, perhaps have jobs, and, in the end, gain a sense of their own self-worth. “These kids have so many issues to deal with, including respiratory, sleep, weight, muscle function … some have even died from it. But today there is so much education, so many avenues to learn from, and our kids are in such a better place than the ones before them. The president of our local [Prader-Willi] chapter has a daughter in her early teens who plays piano, soccer, attends regular school. She’s a poster child for the disease, and she’s just a few years older than Madison. So if she can do that, where can Maddie go?” she asks.
Hurdle’s attitude and optimism are phenomenal. “Don’t get me wrong. It wasn’t so good in the early days, but it doesn’t help to sit around and wonder why she isn’t normal. It was especially hard on Clint, who faced a different kind of struggle because he was traveling. He went through a time when he was so depressed, crying in his hotel room and not wanting to leave the hotel. He would look for a sign, something that would tell him why we were chosen for this,” she says. “Then at the end of one road trip, the team buses took everyone back to Coors Field from the airport. It was late at night, and Clint was in his office going through a stack of mail, and he found one piece that said, ‘To Clint Hurdle.’ He read the enclosed letter, and at 2:30 a.m. called me saying, ‘Remember I told you I kept waiting for a sign? I’ve found it.’” Enclosed in the letter was a brief paragraph, which read, ‘I know what you are thinking, You need a sign. What better one could I give than to make this little one whole and new? I could do it; but I will not. I am the Lord and not a conjuror. I gave this mite a gift I denied to all of you — eternal innocence. I have chosen you. You have not chosen me. This little one is my sign to you. Treasure her!’
“To this day we don’t know who sent it or where it came from,” Hurdle says. A bit of research found that the passage originated from a monastery where kids with Down Syndrome were taught. Today, a framed picture encasing these words hangs in Madison’s room, a reminder that perhaps she does serve a purpose greater than even her parents can imagine. Now 5 years old, Madison is on growth hormones, which she began taking before she was a year old. Her muscle tone is slowly getting stronger, and she is able to run and play with her younger brother. Each day, her parents watch carefully, looking for the smallest signs of progress that so many others take for granted: “Some of our first struggles were to get her to eat, because the length of time it took was counteracted by the energy she consumed in the process. She is missing her 15th chromosome and the protein generated by that chromosome, which tells her brain she’s full. So she is still hungry, and these kids typically cannot control what they eat. Their metabolism is so slowed down they cannot generate the growth hormone that makes kids stronger. We try to limit her to 800-1,000 calories a day, and the growth hormone gives her body what it lacks on its own.”
The Hurdles also have struggled to understand how Madison’s behavior is affected and realize her life runs more smoothly when she is allowed to finish a task before moving on. “This helps in her classroom, because we can tell the teacher to prepare her to finish something. It’s about always keeping one step ahead,” she explains. Next year, when Madison starts kindergarten in a regular school, the Hurdles plan to have an aide in the classroom who can help Madison adjust. Karla HurdleThe Hurdles’ son, although still a toddler, understands Madison is more limited in her abilities, but continues to push and encourage her to keep up. “Just a year ago, she didn’t want to go outside and play in the cul de sac with all the other kids. A lot of that was because she couldn’t run. In fact, she did not walk until she was 28 months. It was so wonderful to see her wanting to run and play with her peers,” says Hurdle.
Looking back, Hurdle says that Madison’s defect could have been diagnosed while she was still in the womb through a fish test, a simple blood test that tests specifically for that chromosome. “In hindsight, Maddie was very low movement in utero, and she was born breech a couple of weeks early. You look at that now and realize so many signs were there, but at the time I never knew anything was wrong or different,” she says. The decision to have another baby was not taken lightly. Hurdle’s sister had donated eggs, and Madison had been born after in-vitro fertilization. The remainder of the donated eggs were frozen and, once eggs are frozen, they could not be tested. “We were told the risk was less than 1 percent that we would have another Prader-Willi child. Finally one day Clint and I looked at each other and said we think we’re ready to have another child. In a way this was a selfish decision, because we wanted her to have a sibling who would spur her on, be her competitor, make her keep up. And he’s such a compassionate little guy. I know he’s going to be able to look after her and help her keep going,” says Hurdle.
For the Hurdles, the heartache of a sick child has forged a strong and profound realization. “In a way, we both feel she’s not really our child, and we’ve turned it over to God. We may not agree with what happens, but we stopped asking ‘why?’” she says. “She’s our little angel without wings, here on earth.”
Written by ELLEN GRAY
Photography by KIT WILLIAMS
