Hurdle and family embracing their 'treasure'

Hurdle and family embracing their 'treasure'

"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 conjurer. I gave this mite a gift I have 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!"

-- "The Clowns of God" by Morris West

ARLINGTON -- When Rangers hitting coach Clint Hurdle went to work last Wednesday, his daughter Madison kissed him and gave him a message."

"Tell Nellie Cruz to win the game," she told her father.

Said Hurdle, "She picked Cruz as her favorite player. This was back early in Spring Training."

The father-daughter parting was after Madison had her strictly controlled breakfast of a half-cup of cereal, quarter-cup of low-fat milk and half of a banana. That's 250 calories on a 900-calories-per-day diet.

Madison is seven. She loves going to school with other kids. She loves baseball, swimming, singing and dancing, Leapster, McDonald's ...

"She is doing a lot of things most seven-year-olds are doing," Hurdle said. "She is an angel without wings. She has taken my wife, Karla, and I places we never thought we would go."

Madison does all this while dealing with Prader-Willi Syndrome, a complex genetic disorder that often causes low muscle tone, short stature, cognitive disabilities, problem behaviors and a chronic feeling of hunger that, if not watched carefully, can lead to obsessive eating and life-threatening obesity.

When Madison was born on Aug. 7, 2002, doctors knew something wasn't right. They just weren't sure what was wrong. Madison spent her first 18 days in the hospital while undergoing tests and being pricked with needles to draw blood. At one point Clint and Karla wanted to scream, "Enough!" put their foot down and tell people to leave their baby alone.

It took 12 tests to discover Madison had PWS.

"From the moment the doctor walks in and says, 'We need to talk' ... you feel it," Hurdle said. "You take that long walk down the corridor to the office and sit down. The doctor tells you: 'Your child has something wrong; your child has issues; your child has a birth defect ..."

The doctor also says it's not a disease that can be cured with time, money and treatment. This one is for life.

"It's one of the most difficult things you'll ever face," Hurdle said. "It breaks your heart. You go through a pregnancy and people ask you, 'Do you want a boy or a girl.' You know the answer: 'I don't care, as long as the baby is healthy.'"

"Well, it's not healthy. So what do you want to do? Where do you want to go?"

Hurdle has always gone places in baseball. He was a big-time prospect for the Kansas City Royals who was on the cover of Sports Illustrated at age 20. He played 10 years in the big leagues and hit .417 in his only World Series. He was a Minor League manager and a Major League hitting coach.


"I think our relationship is stronger, better, richer because of this. There is more love there than there might not otherwise have been because this challenges us in so many ways."
-- Clint Hurdle

He was named Rockies manager on April 26, 2002. That was five months before Madison was born.

As a baseball professional, Hurdle did all the things necessary to be a part of the community. He did the banquets, the golf tournaments, all the fundraisers that go to quite worthy causes.

But Madison was different for Clint and Karla Hurdle. She was theirs. She was not a fundraiser that ended at a certain hour. She was round-the-clock. Madison changed their lives forever.

Difficult? Yes. Rewarding and enriching? Far more so, especially once they learned about the support that was available, the same support they now pour out to others.

"You really don't understand what special-needs parents go through until you are part of that fraternity," Hurdle said. "It's just incredible how many people are there to help, and realizing that we weren't alone [helped]. There are a whole lot of people out there who are gifted in some phase for a child who needs help.

"It's a great thing to ask for help from other people. We have so many people who have reached out to help Maddie with talents I don't have and gifts I don't have: All different kinds of therapists, people who actually specialize in the syndrome, the research being done, doctors and universities dedicating time and money to do the research."

The initial diagnosis was just the start. It has been a long and difficult journey just to this point. Madison did not walk until she was 29 months old. She didn't learn to run until she was four. She went through a long and frightening battle with epilepsy that has hopefully, mercifully ceased. She has been seizure-free for about two years.

A big battle is waged daily with food. It is the most significant issue with PWS. Children who have it lack an internal mechanism that is supposed to tell them when they have had enough to eat and are full. If left unchecked, a PWS child will eat their way into obesity and all the problems associated with it.

That's why she is on a strict 900-calorie diet. Her five-year-old brother Christian has been told there are certain things that can't be eaten in front of his sister. Vigilance must be maintained over food storage in the kitchen. There is no self-restraint, even into adulthood.

Dad just can't fire up the barbecue in the backyard and throw some hamburgers and hot dogs on the grill. A tired mom who doesn't want to mess with dinner can't just drive through McDonald's and grab a sack of quarter-pounders with fries on the run.

But Madison does occasionally get McDonald's or a non-fat ice cream cone at the local Cold Stone Creamery. It's a well-deserved reward for doing something special, whether doing well at school, learning to pick up coins at the bottom of the swimming pool or climbing the stairs at home.

"We give her goals to meet and special treats when she accomplishes them," Hurdle said. "She knows what the Golden Arches are. You make sacrifices and do a lot of things you never thought you would have to do."

Hurdle's career still thrives. He managed the Rockies for seven-plus years and took them to the 2007 World Series. He is now the Rangers' hitting coach. Karla stays busy with both Madison and Christian, who is doing well and is a big help with his sister.

The Hurdle family is doing well, maybe even better than perhaps otherwise if things had turned out "normal."

"I think our relationship is stronger, better, richer because of this," Hurdle said. "There is more love there than there might not otherwise have been because this challenges us in so many ways.

"You're all in. It's unconditional love, not just with Maddie but with each other. It's really until death does us part when you see how much love and patience your wife is throwing out there every day."

The future is not bleak for Madison or others. PWS has only been identified for about 40 years, but there is much research and treatment being done. The fight against excessive eating and obesity is a life-long battle but there is hope in other areas.

Human growth hormone has become standard in the treatment of PWS, helping with height, weight, body mass, strength and agility. It may also help in cognitive development.

"We don't know what's in front of us but we're doing well," Hurdle said. "Most people who have children with PWS are living day-to-day. The best advice we ever got from a doctor is to let her write her own book, let you know what she likes and doesn't like. Just pay attention and don't take anything personally.

"We're in a good place. We have seen enough families dealing with PWS to know we are probably fortunate. There are more kids that probably have more [serious] challenges."

Hurdle has taken on the challenges that have been presented, not only as a loving and engaged father but as a national spokesman for Prader-Willi Syndrome. He not only attends banquets, golf tournaments and fundraisers, he and others also hold them.

He is an ardent advocate for Madison and thousands of others dealing with PWS. It was a role that came upon him one difficult weekend in Houston, shortly after Madison was born. He was managing the Rockies at the time but Madison and his family were foremost on his mind. Hurdle was not doing well.

"I cried just about all the time except when I was at the park for three days," Hurdle said. "Once the tears came out, they couldn't stop. I spoke to God. I said, 'God, we're in this, but can you give me a little something to hold on to, some direction, because I'm not doing well.'

"I still needed something tangible."

When the series was over, the Rockies flew back to Denver. At 2 in the morning, Hurdle was in his office at Coors Field mechanically flipping through the mail. He knew which ones were bills and which were fan mail. Then he found a plain envelope with no return address.

To this day, he still does not know who sent the letter. He has tried to find out but has had no luck. But he has since shared the contents of the envelope with hundreds of people in similar circumstances.

In his office, he opened the envelope. Later that morning, before the sun came up, he shared what was inside with his wife Karla. It was a breakthrough moment that pointed them in the right direction. It brought closure for both and has guided them through their journey.

It was a photocopy and it started out by saying, "This will help you understand." Then there was a passage ...

Hurdle would find out later it was from "The Clowns of God" by Morris West.

"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 conjurer. I gave this mite a gift I have 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!"

T.R. Sullivan is a reporter for MLB.com. This story was not subject to the approval of Major League Baseball or its clubs.