Archive for Thursday, February 19, 2009

10-year-old Jayhawk fan fights rare lung disease

Ten-year-old Michael Douglas is wheeled out to the playground at Wellsville Elementary School by his classmates Gavin Wilson, 11, and Dylan Leckner, 11. Michael suffers from interstitial lung disease and has been on oxygen since he was 1 year old. The two classmates pay special attention to the needs of their friend, often hanging out indoors with Michael during recess as he is unable to participate in high-level activities or be outside when temperatures dip below 50 degrees. While the friends started recess outside on Feb. 5, they ended up playing inside because of the chilly wind.

Ten-year-old Michael Douglas is wheeled out to the playground at Wellsville Elementary School by his classmates Gavin Wilson, 11, and Dylan Leckner, 11. Michael suffers from interstitial lung disease and has been on oxygen since he was 1 year old. The two classmates pay special attention to the needs of their friend, often hanging out indoors with Michael during recess as he is unable to participate in high-level activities or be outside when temperatures dip below 50 degrees. While the friends started recess outside on Feb. 5, they ended up playing inside because of the chilly wind.

February 19, 2009

WELLSVILLE — Dragging around a small oxygen tank, 10-year-old Michael Douglas shoots baskets during recess. He doesn’t let the plastic tubing, which runs from the tank to his nose, get in the way.

It’s too chilly and windy for Michael to be outside, so he aims for a makeshift basket in the hallway outside his fifth-grade classroom at Wellsville Elementary School.

Michael’s three buddies run after loose balls and all four take turns shooting. They laugh and joke. Michael also uses the opportunity to razz his friend Gavin Wilson, who roots for Kansas State University.

That’s because Michael is a huge Kansas University fan.

“I don’t think I’ve ever seen Michael wear anything that wasn’t KU,” his teacher Linda Robinson said. “He’s pretty quick to tell me that if there’s a game on, there is to be no homework.”

Family, school staff, doctors, friends and acquaintances describe him as a sports nut and a major Jayhawk supporter. They also say he is a typical fifth-grader — despite a rare lung disease that means he must use oxygen at all times. He also uses a food pump at night and endures a two-day steroid treatment every six weeks. This year, he began using a wheelchair because he gets short-winded. He also must stay indoors when the temperatures are below 50 degrees.

But you will never hear Michael complain or ask, “Why me?” Instead, he counts his blessings.

At Thanksgiving, Robinson asked her class to write what they were thankful for, and Michael wrote that he was thankful to be alive.

“That was very hard for me to read,” Robinson said. “You know, here we are all thinking about turkey and dressing and he’s just glad that he’s alive.”

Those who know him say he has more willpower than the football and basketball players he looks up to.

“Words cannot even describe how impressed I am by his spunk and his desire to live and his sense of humor,” said Marci Mulloy, a respiratory therapist at Children’s Mercy Hospital in Kansas City, Mo. “He’s just an incredible kid.”

His illness

Just before his first birthday on Feb. 23, 1999, Michael began breathing rapidly, so his parents took him to the hospital emergency room in Ottawa. From there, he went by ambulance to Children’s Mercy.

At the time, they thought he had recurring pneumonia.

“He would be in for a few days and back out, in for a few days and back out,” his mother, Lisa, said. Michael also was having trouble keeping food down.

Doctors didn’t know what was wrong, so he was hospitalized for about 40 days while they investigated. Michael was born with pectus excavatum — a sunken chest — and, at first, doctors thought that might be the cause. They inserted a bar into Michael’s chest, but his condition didn’t improve. The bar eventually was removed; it was the last of six surgeries before the age of 5.

During the long hospital stay, he had two surgeries, including one to insert a gastric feeding tube.

In April, Michael returned home although doctors still didn’t know what was wrong. They sent him home with oxygen.

A year later, Dr. Philip Black, pediatric pulmonologist at Children’s Mercy, diagnosed Michael with interstitial lung disease. It’s an illness that causes progressive scarring of lung tissue, and so affects Michael’s ability to breathe. Black said it’s basically a stiffening of lung tissue.

After the diagnosis, Michael was sent to Houston, where he saw a specialist who devised a plan for how to live with the disease, because there is no cure. The plan included medicines and steroid treatments. Lisa said the steroid treatments made a big difference.

“Before, he would be in the stroller and just have his head down all of the time,” Lisa said.

Lisa, who was a first-grade teacher before Michael’s illness, asked the specialist if Michael would be able to attend school. She was crushed when he said he would be too tired.

But Michael proved the doctor wrong. He has been in school since kindergarten, and while his illness has caused him to miss weeks of school here and there, he has managed to keep up. In fact, he has earned all A’s.

“We’ve had a great support system and a school that has been very understanding,” Lisa said.

Facing the unknown

In 2005, the Douglas family got a call from Children’s Mercy. A researcher had discovered what type of interstitial lung disease Michael had. It’s a rare type called an ABCA3 surfactant deficiency. Black estimates that fewer than 100 children nationwide have been diagnosed with it.

Unfortunately, identifying the type of disease changed nothing for Michael. He has the same regimen, and there still is no cure.

“He is as rare and new as the discovery is and the future is not terribly well-known,” Black said. “We don’t directly expect him to get better unless there is a discovery of a therapy that has not yet occurred.”

In the meantime, Black monitors Michael closely — as everyone who knows the blue-eyed boy prays for discovery of that therapy. Black says Michael’s success is largely due to his family.

“The biggest reason that I think he appears to be doing so well is the way that they’ve been able to create an enjoyable life for him in spite of this and they work within his limitations,” Black said. “They take good care of him, and they know him well enough to seek additional help when needed.”

In good fun

Sports also have played a vital role. Black recalls one time that Michael, who was very ill at the time, asked him to hurry up and decide whether to hospitalize him or send him home.

Why the hurry? KU was playing basketball.

And leave it to Michael to get a diehard University of Missouri fan to wear a Jayhawk shirt.

In 2005, Mulloy, his longtime respiratory therapist, wore a KU shirt and asked him to be ring bearer in her wedding. She even gave him a KU basketball as a gift.

“So instead of eating crow, I was eating Jayhawk for his sake,” she said, laughing.

Michael also got his principal — Randall Renoud, a K-State fan — to dye his hair blue. That’s because they made a bet and the loser had to spray the other team’s color in his hair. But the principal got him back by making the fifth-grade class wear purple for a school picture. Each class had a different color.

“I put him in purple because I knew he would never wear a purple shirt. So, I got him in purple,” he said, laughing.

Of course, Gavin, his K-State buddy, had to loan Michael a purple shirt. Michael wore it just long enough for them to snap the picture and then he pulled it off — revealing his KU shirt underneath.

Besides KU, Michael also has a big heart for Trenton Meyer, a sophomore at Wellsville High School who averages about 17 points a basketball game. Michael goes to all of Trenton’s home and away games and roots for him in other sports as well. Michael even got Trenton’s autograph on a picture that was published in the local paper.

“He’s kind of a brother and he is really cool,” Michael said. “He is one of the best players on the team.”

Trenton said Michael started watching him play sports in middle school.

“He always puts a smile on my face,” Trenton said. “He’s got a lot of heart and he’s a really neat kid.”

Sports minded

Michael’s dad, whose name also is Michael, said his son doesn’t dwell on his lung disease.

“He’s focusing on: When is the next game? Who is winning? What stats are going on? Who is KU playing this week? Who is Wellsville playing?” he said.

Of course, Michael’s room is decked out with sports memorabilia, especially KU items. He has a closet full of KU jerseys and a poster of Boston Celtics player Paul Pierce, a former Jayhawk. And then there’s Mario Chalmers’ Miami Heat jersey, which he received as a Christmas gift. He also has a framed letter from Bill Self and a football autographed by Mark Mangino.

Michael attended the KU football awards ceremony on Jan. 31, where he snagged several autographs, including ones from Kerry Meier, Darrell Stuckey, Todd Reesing and Jake Sharp.

“He’s just having these conversations with these big dudes. It’s just pretty funny,” his dad said.

His sister Mikayla, 13, was too embarrassed to get an autograph from Sharp, so Michael did it for her. He knew that his sister thought Sharp was “cute.”

“I thought it was great,” Mikayla said.

Lasting memories

What’s Michael’s favorite KU moment? Well, he couldn’t narrow it down to just one. There was KU’s game against Tennessee at Allen Fieldhouse where he got to touch the basketball during a TV timeout and then the ball went to Sherron Collins, his favorite player. He also enjoyed it when KU beat up on K-State in football. Then, there was that national championship.

His dad said Michael was so excited that he started jumping around and yelling. He lost his breath and started coughing.

“We always have to monitor that a little bit — every time they win,” he said. “We’ve had to monitor that a lot lately.”

And while Michael talks a lot about Chalmers’ miracle three-point shot during the 2008 national championship game, his teacher hopes that Michael realizes he is so much more special than that shot.

“I know Michael would love to run down the court and make that miracle shot and he’s not going to get that opportunity,” Robinson said. “But, I hope that he realizes that he is a miracle and if he would just see all of the gifts that he has given us, he would realize he is a miracle.”

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