As a football coach, Derek Dooley knows about taking on tough opponents. But in the NFL there are timeouts and an offseason. In real life, the Dooley Family faces a dangerous opponent that requires 24 hours of game-planning, 365 days a year.
Since Dooley’s 14-year-old son, Peyton, was diagnosed with Type 1 Diabetes (T1D) a year and a half ago, the family has gone on the offensive.
That’s why the Cowboys wide receivers coach will be dressed up in a tuxedo for the JDRF Greater Dallas Chapter’s 20th Anniversary Dream Gala on April 9 at the Omni Hotel. Dooley joined the chapter’s board of directors to help raise funds to find a cure for his son and the millions of other people around the world, children and adults, affected by T1D.
Each year at the gala, a family is asked to share its story, with this year being the Dooleys. But Derek also wants to share their story with Cowboys fans to help raise awareness of T1D.
“Peyton was diagnosed in August 2014 when I was in Oxnard for training camp,” recalled Dooley. “Thank God my wife, Allison, is a doctor. She’s an OB-GYN and recognized the symptoms.
“He was watching TV with his older brother and kept telling him, ‘Hey, hit pause, I have to go to the bathroom.’ His brother was like, ‘Why are you going to the bathroom all the time?’ He kind of joked about it. Allison said, ‘Hey, that’s a sign of Type 1 Diabetes.’
“She started watching him and he lost 10 pounds and was still going to the bathroom. She took him to the pediatrician who rushed him to the emergency room because his blood sugar was off the charts, and boom, he’s got Type 1. We’re fortunate Allison had that medical training because without recognizing the symptoms, he could have had seizures or another type of bad event.”
Dooley and the JDRF (formerly known as the Juvenile Diabetes Research Foundation) are not only battling a disease, they’re battling the public’s misconceptions of Type 1 Diabetes.
“The biggest misnomer is that people with T1D eat too much sugar and don’t exercise,” said Dooley. “I’ve argued that we should change the name to remove that stigma. The cause of Type 1 is unrelated to diet and exercise. It’s an autoimmune breakdown. Something in your body genetically attacks your pancreas and kills it. Now it can’t produce the insulin your body needs to function. It used to be called juvenile diabetes because they thought it was just kids, but people are getting Type 1 in their 20s, 30s, 40s, later in life. I’ve also seen it attack a child as young as 2 years old. Can you imagine?”
The hardest part for those battling T1D is figuring out the right level of insulin to keep their blood sugar in range. It’s a formula that is very difficult because if the blood sugars levels are off, it can have long-term effects on other organs.
“For Peyton, the test is a prick about eight to 10 times a day,” continued Dooley. And there are about four shots of insulin a day, so do the math, that’s almost 15 times a day. We have jars and jars of needles at our house.”
For Peyton, Derek and Allison, there is literally no rest for the weary.
“The scariest part is at night,” said Dooley. “Anything can happen in those eight hours you’re in bed. If the level drops low and you don’t know, it could be disastrous. Allison wakes up at 1 a.m. and 4 a.m. and checks his blood sugar, so there are a lot of sleepless nights. But what about single parents? Holy smokes, are you kidding me? They don’t sleep. It’s a constant challenge.
“And so many things affect your blood sugar: mood, anxiety, puberty, food, exercise. This is a tough time for Peyton because there are so many changes in his body as a 14-year-old. He also is active with tennis.”
Peyton’s T1D has had an effect on his brother, John Taylor, who is 17, and 12-year-old sister Julianna. They all know how to give the shots and must stay on a schedule, trying to eat dinner at the same time. While every family deals with the disease differently, T1D is a part of every minute of every day of their lives.
“There are two blessings, though,” said Derek. “First, Peyton’s nature is that he’s a very serious-minded, disciplined and intelligent young person. He manages this better than I could do it at 47 years old. He manages the carbs, the ratios and says, ‘I’m not eating that cookie or those carbs.’ Second, Allison is a doctor, and that gives the rest of us full peace of mind that she’s on top of everything.”
Derek tries to focus on the positive, counting his blessings while working hard for JDRF, which is the leading global organization funding T1D research.
“The thing that drew us to JDRF, the reason I serve on the board of our Greater Dallas chapter, is the fact that I’ve never seen a charitable organization that delivers results like them,” said Dooley. “We have a two-pronged mission. Number One is to find a cure by investing in clinical trials. There’s a technology called encapsulation that is like an artificial pancreas through stem cells.
“Number Two, the mission is to advance everyday quality of life through investing in products. For example, we just got a device where Peyton can put something on his arm and we can monitor his blood sugar on our phone. It’s an app. It helps during the night. Instead of pricking his finger, we can look at the phone. If the numbers are close to the edge, you can double-check with a prick. If his level goes too low, it sets off an alarm.”
With these advances, Peyton can do more things. Parents of kids with T1D are often scared to let them spend the night at a friend’s house. But Peyton was able to go to a tennis tournament for his USTA club team.
“He was down in Waco and we had a scare,” said Dooley. “The alarm went off at night, but his phone was set to do not disturb. It’s 2 a.m., and we’re calling and texting him because we also get the alarm. We call the hotel, but all the kids’ rooms are listed under the coach’s name. We do the ‘find my iPhone,’ which makes a loud sound and finally wakes him up. The whole situation scared the heck out of us. Now we have second and third contingencies. You’re constantly learning to manage situations.”
For inspiration, Dooley can go to the office down the hall and talk to quarterbacks coach Wade Wilson, who manages diabetes with multiple injections of insulin every day.
“Think about ‘Sticks’ (Wilson’s nickname) and think about the advances that have been made since he was diagnosed,” marveled Dooley. “What was it like for him 30 years ago? I can only imagine how tough it was.
Fortunately, thanks to advances, those dealing with T1D truly can function like any other person as it relates to a job, athletics, or in the case of Peyton, being a kid. Because of that, it’s not viewed quite as seriously as cancer or cerebral palsy. Derek’s nephew has cerebral palsy, a disease he calls “horrible.”
“The flip-side is people don’t understand that with T1D you have 24 hours of maintenance,” he said. “You can never drop your guard. The discipline it takes to keep your sugar levels to avoid either crashing and dying, or spiking and suffering the long-term effects, gosh, it just never goes away. It’s not like going to the hospital once a month for treatment. It’s constant, every minute of every day. This is your new life forever, there’s no going back.
“I’ll be honest. You cry as a parent. You feel so bad for your kid because he didn’t do anything to get this, but you also put it in perspective. I circle back – and this is something Allison and I talk about a lot – but we’re so blessed. We’re together. We have good means and three great children. There are so many families that have eight million problems worse than us. We count our blessings.”
Yet, it’s a father’s duty to do everything possible to help his child. One small way is dressing up in a tuxedo for a gala. A big way is coaching football fans to learn more about T1D.
“I want Cowboys fans to be aware that this is not diabetes as we know it,” said Dooley. “There are ways to help. JDRF is worldwide and there’s a chapter in your area that holds events throughout the year, things like bike rides or fun walks or galas. If we could all find one event and get involved, that’s all we ask. By investing in research, they’re making unbelievable progress.
“I hate asking for help because everybody’s got problems. I mentioned my nephew has cerebral palsy. I have a cousin whose son has epilepsy. There are people in our city who can’t afford to eat, so I’m a little reluctant to say ‘help us.’ But so many people are touched by T1D, and we are so close on this, medically.
“Everyone I talk to is convinced that in Peyton’s lifetime there will be a cure, so let’s make it happen.”
(This story originally appeared in Dallas Cowboys Star Magazine. For subscription information, click here.)