(Photo courtesy of the Johnson family)
DeLaney Johnson has tan skin, her dirty blonde hair in a pony tail, hazel eyes, and wears a grey Abercrombie sweatshirt. She stands four-foot-eleven, which is slightly taller than the average 11 year old girl, and weighs just under 100 pounds. Athletically, she is gifted, playing for an elite soccer team and also playing basketball, flag football and is the fastest sixth grade girl at Wilson Elementary School in Petaluma, Calif. In fact, Johnson won all of her events at the West Side Relays last year, a track competition for local fifth and sixth grade boys and girls. To anybody that sees Johnson, they would see an in-shape, and athletic 11 year old girl. What they wouldn’t know is that she was diagnosed with type 1 diabetes right before her fourth birthday and battles with the disease every day.
“She went to the hospital a week before her fourth birthday and turned four in the hospital,” says DeLaney’s mother Robin Johnson. “Laney was drinking water and gatorade at an odd rate and wet the bed when she was potty-trained for two years, so I brought her in to see the doctor. In the hospital she was diagnosed with type 1 diabetes and we had to stay for 10 days to learn how to live with a juvenile diabetic.”
Diabetes is a lifelong disease, and is autoimmune, meaning that the immune system mistakenly attacks and destroys healthy body tissue. DeLaney’s pancreas does not produce insulin and it never will.
Doctors told the Johnsons that type 1 diabetes can be genetic, but there are many different beliefs. There are no known family members on either side of DeLaney’s parents to have diabetes. One speculation was that Robin and her husband Frankie’s genes crossed and created the diabetes in DeLaney.
From age four to eight, Johnson had to take eight to 10 insulin shots per day. Shots are taken in any part of the body where you can grab a piece of fat and it’s usually done in the buttocks, stomach or shoulder. The problem with the shots is that if you give shots over and over in the same spot, atrophy occurs, which wastes away part of the body. To prevent atrophy, the Johnsons would change the locations of shots as much as possible. She has also had to get her blood sugar checked by a glucometer pricking her finger and taking blood, and still has to get pricked 12 to 15 times per day.
“After the first year, I was used to the pricks and it doesn’t hurt,” a tough DeLaney says. Her fingers are a reminder of her diabetes, with tiny white holes in them after countless needles pricking at her young fingers.
However, a horrific event at eight years old, took Johnson off the constant shots, and changed her life forever. One night Johnson’s blood sugar was so high that her brain swelled up and no matter how much insulin doctors gave her, nothing would bring the blood sugar down. Johnson was taken by an ambulance and put into the children’s wing of ICU in Oakland for two days, until doctors could get her enough treatment and bring her down.
“I felt sick and was throwing up,” Johnson said on the experience. “I remember I had a lot of headaches and I was really tired.”
At the hospital, doctors put Johnson on an insulin system and decided to permanently put an insulin pump in her body. She constantly has a purple pump that connects to a needle that is inserted into the top of her butt. Johnson is on an eight to one insulin ratio, so for every eight carbs she eats, one unit of insulin is put into her. As she grows the ratio can grow as well. The pump is a positive step and Johnson prefers it to all the shots, but her parents still have to check on her at 11 p.m., 2 a.m., and 4 a.m. Sixth grade camp is coming up, and Johnson’s parents can’t be there so they are going to have to find a teacher there that they can trust and tell them how to check on Johnson’s diabetes for a week. If she is not treated properly when checked on, Johnson could die in her sleep.
Having to be rushed to Oakland wasn’t even Johnson’s scariest even with diabetes. When she was five years old, she stopped breathing in her sleep, her faced turned blue and she started kicking violently in her sleep.
“Frankie fell asleep on the couch, and if it wasn’t for that, then nobody would have heard her kick and the worst would have happened,” Johnson’s mother Robin remembers.
The Johnson’s had to immediately call 9-1-1, and the ambulance put her on an oxygen machine and drove her to the local hospital. At the hospital, doctors never figured out what exactly triggered her to stop breathing, and kept her for 48 hours.
“When the people came, I was a lot more relaxed and felt like I could breathe again,” Johnson said.
Now Johnson has a baby monitor in her room and one in her parents’ room, so they can hear if she stops breathing or if anything sounds wrong.
With her diabetes, Johnson has to be on a strict diet of low carbs and high protein, because insulin could add a lot of weight. She does still have treats on special occasions, and with Thanksgiving coming up a slice of pie or a cupcake is in order for her. But, at her age, the pizza parties in class and students bringing in birthday cupcakes are a constant struggle.
Johnson has been counting carbs for years now and has already memorized the amount of carbs for many foods at only 11 years old.
“At first I had to use a book that showed me how much carbs were in food, but then I started remembering and know most foods now,” Johnson said.
At lunch time at school she counts her carbs and puts the right amount of insulin into her pump. If she feels bad or needs help, she goes to her mother, who is a teacher at her school or her father, who helps with the sports and physical education at the school as well. With Johnson going into junior high school next year, her parents are trying to make her more independent.
A big part of Johnson’s life is sports, and diabetes plays a role in her athletic life. Her blood sugar is checked before a soccer game, at halftime, and after the game. If her blood sugar is too high or low, she could pass out. At halftime if her blood sugar is under 100, then they give her something to eat and if she is over 100 then they give her insulin through the pump.
“If my blood sugar is high on the field, I feel like I’m going to throw up, but I usually just play through it,” Johnson said. “If I feel low than I have to sit out of practice for awhile or tell my coach to take me out for a little during games.”
An hour of exercise, brings blood sugar down about 100 points, so her athletic life is a positive, but has it’s struggles. She has to have body awareness and knows when she feels too low or high on the field.
One of the toughest parts of being a kid with diabetes, is forgetting about your disease while you are trying to be a normal kid and hangout with friends. When Johnson’s diabetes hits her the hardest at times, is when she’s with friends, because she isn’t thinking about it or any triggers.
“I can’t have sleepovers at my friends’ houses and that might be the worst thing,” Johnson says on her diabetes. “The parents would have to know everything about diabetes and my parents just don’t trust that.”
Homework and tests can be affected by the disease too. If her blood sugar is low, Johnson feels dizzy and her vision gets blurry.
“If my blood sugar is too low, my head hurts and vision feels blurry, so I have to eat something, and take a test at a later time,” Johnson said. Even with the disadvantage, Johnson has all A’s and B’s on her report card.
For the last two years, Johnson and her fourth grade teacher Gina Evenich, have rode in the Tour de Cure, a bike race in Napa that raises money for the American Diabetes Association. When Johnson did it two years ago, she didn’t learn how to ride a bike until a week before the race, and ended up riding five miles with her teacher. This year, she upped the ante and rode 20 miles.
“I don’t think people know how much parents and kids with diabetes have to go through,” Evenich said. “I was so naive about the disease until I had DeLaney in my class and saw her willpower and responsibility.”
Evenich loves to ride her bike and hopped at the opportunity to race with Johnson for a great cause. The two made flyers and raised $230 each to ride in the race.
“The bike ride really gave awareness in the classroom and all the kids were interested to learn about the race and diabetes,” Evenich said.
Besides the race supporting a genuine cause, Johnson smiled when talking about riding her bike and most of all, called it “fun.”
Johnson’s day starts with having a nutritious breakfast, and starting with her numbers between 100 and 150. Throughout the day, she has to make sure she feels good and does not feel too low or high before PE, lunch, and flag football. After school she goes straight to soccer where she has to watch for any triggers, and then has homework. On some days, she has flag football, soccer and basketball all in one day. In the last few years she has taken up hip-hop dance as well.
“The worst thing about diabetes to me is just having to constantly deal with it,” Johnson says on her daily battle. “It’s not a disadvantage, but just a part of my life.”
“For parents, the worst thing is having to see your kid struggle with it, and wishing you had the disease instead of her,” Robin Johnson said.
Johnson will continue to play sports, dance, work hard in school and hangout with her girlfriends. She will also continue to count her carbs and deal with a disease for the rest of her life. Diabetes hits her like a brick wall daily, and when asked about how it affects her, she simply brushes it off at just 11 years old. Her goal is to play soccer or run track in college, without even worrying about diabetes slowing her down. Most importantly, despite her daily battles, she will always see diabetes as just a part of her life, and not a disadvantage.
Sidebar: Diabetes is a lifelong disease, but many professional athletes have endured successful careers while dealing with type 1 diabetes, making Johnson’s dreams even more realistic. Ron Santo, third basemen for the Chicago Cubs and White Sox from 1960-1974, made nine All-Star teams while dealing with diabetes, and not even having a glucometer in his playing days.
Jay Cutler, quarterback for the Chicago Bears is one of the most adamant athletes dealing with type 1 diabetes and has been vocal about his disease. “It doesn’t have to change your goals or your aspirations of what you want to do, or who you want to be in the future. It’s just a little speed bump that you’ll get through, and you just have to manage it each and every day,” Cutler said in a January interview with Yahoo.