2004-11-30 / Front Page
Christine Kenny the poster child for juvenile diabetes
BY MICHELLE ROSENBERG
Christine has spent the last five years fighting a courageous battle against type 1 juvenile diabetes, which she was diagnosed with at 22 months. Type 1 diabetes is an autoimmune disorder in which the pancreas does not produce insulin, which controls the level of blood sugar in the body.
The effects of one isolated low blood sugar are extremely serious.
“One isolated low blood sugar could be fatal,” Stephanie Kenny said. “It’s important to look at her because she won’t always tell you [when she feels low],” she said.
The Kennys have to stay alert for signs of high and low blood sugar in their daughter. For lows, they look for paleness, sweat, nausea, shakiness, weakness and hyperactivity. Symptoms of high are nausea, headaches, irritability and excessive blinking, which indicates blurry vision.
Christine was recently chosen by the JDRF (Juvenile Diabetes Research Foundation) as a poster child for juvenile diabetes. She is in two commercials, as well as advertisements that have been featured in Time, Elle Girl, Entertainment Weekly and many others.
Christine’s battle with diabetes began Nov. 6, 1999. She was just under 2 years old. Her parents noticed that she kept asking for water, and that something seemed a little off.
Christine had never even had a sick visit with the doctor, but something just didn’t seem right, Stephanie Kenny said.
The Kennys took Christine to the doctor and were told to take her immediately to the hospital. They were not even allowed to go home to pack a bag.
Christine was in an emergency situation and needed medical attention immediately. The pediatrician happened to have a specialty in juvenile diabetes and was able to recognize Christine’s symptoms right away.
“I credit him [the pediatrician] for diagnosing her so quickly — it was within two minutes,” Chuck Kenny said.
The Kennys were to find out that Christine’s blood sugar level was at 997, which is dangerously high. Her normal blood sugar level should be between 100 and 200.
This was a very stressful time for the Kenny’s. Stephanie was seven months pregnant with their second child, Rachel, now 5. The stress caused premature labor, which had to be stopped. Rachel was born shortly after, about three weeks early, just two days before her sister’s birthday.
The Kennys had to learn fast how to properly care for a child with diabetes. They had to separate true medical facts from false stereotypes. Also, they had to work to provide a positive atmosphere for themselves and their daughter to make sure she didn’t grow up looking at her diabetes with the wrong perspective.
“We’ve come a long way,” Chuck said.
They had to take a course at the hospital before they were allowed to take Christine home, but what they needed went far beyond a school lesson. They had to learn how to prick their baby’s finger to test her blood sugar, how to measure insulin, how to inject insulin, how to tell when Christine’s blood sugar might be high or low, and much much more. Also, they had to learn how to prepare Christine’s food, which has to be measured to ensure she gets the proper amount of carbohydrates and proteins. Christine’s food has to contain half the amount of sugar in the amount of total carbohydrates.
Once their daughter was diagnosed, the Kennys wanted to do everything they could to help find a cure for juvenile diabetes. They formed Christine’s Crusaders, a walking group for the Juvenile Diabetes Research Foundation (JDRF).
In October, “Christine’s Crusaders” participated in their fifth annual walk. The Kennys raised $30,000 toward research this year alone, bringing their total well over $100,000, which was their goal for their fifth anniversary.
“We set our goal at $100,000. We far exceeded that. We hit well over $100,000 over the last five years,” Chuck said.
The Kennys raised more money this year than any other corporate or family team involved in the JDRF walk. They received the top fund-raising family team award from the JDRF earlier this week, which was presented by Christine.
The Kennys worked hard to raise the funds and the number of walkers on Christine’s Crusaders by sending out a walk letter to family and friends to get them to participate in the walk and make donations. This year, the Kennys took a picture of their little girl and wrote a letter explaining her condition, how previous donations have helped reach breakthroughs, and the importance of taking the walk and/or making a donation. They put Christine’s picture next to the letter on a sheet of photo paper, and mailed out about 100 copies to family and friends. So far, they have gotten about 60 or 70 people to walk on the Christine’s Crusaders team. This year, 12 of their walkers received a “golden sneaker” award for raising over $1,000. There were also numerous people who fell just short of $1,000, the Kennys said.
To make the walkers feel more like a family, the Kennys had red shirts made that said “Christine’s Crusaders” for all 70 of them to wear during the walk.
“It was nice to see 70 people walking around wearing a shirt that says Christine’s Crusaders,” Chuck said. “Christine loved it.”
Rachel has even been supporting her sister in the walk, before she could walk. Her parents had her out there in the stroller so she could show her support and be a part of the Christine’s Crusaders family.
The Kennys admit that it is hard to get people to donate to the cause, especially because people are under the impression that not a lot of the money actually goes to research. But once people see the dedication they put in, they respond.
“It’s hard to get people to give money, especially every year, so it’s important that people understand that it is more than a walk with a lunch afterwards,” Chuck said. “People see that we are dedicated with all the efforts we put in, so they become generous. This is obvious by the $30,000 we raised this year.”
The Kennys also feel it is important that people are aware that with the JDRF, 85 percent of all the money raised goes to research.
“We are comfortable being involved with the JDRF because 85 percent goes to research. That’s important to us,” Chuck said. “We’re doing this for a reason: we want to find a cure.”
Also important is surrounding Christine with positivity. In order to do that, the Kennys have made Christine’s condition their condition.
Every three months Christine needs to see her doctors at Mount Sinai Hospital in Manhattan. The Kennys have made a tradition of making it a family day. They go to the city and visit attractions and eat at different restaurants. The whole family looks forward to it, Stephanie said.
“The whole family has made it our condition. We’ve made it a part of our family routine,” Chuck said.
Christine’s daily routine has to remain the same every day, no matter what. There is no vacation from diabetes. During school days, weekends, holidays and vacation, Christine has to be tested and fed at the same time. As soon as she wakes up, she has her blood sugar tested, then gets an insulin injection in the leg. After the injection, she has to eat breakfast within a certain amount of time to coincide with when the insulin is peaking. Christine then has a midmorning snack.
Before lunch, Christine has to have her sugar tested again. When she is at school, she goes to the nurse to test it herself. Depending on her sugar level, she might need an insulin injection. If an injection is needed, her mother has to be called in to the school to administer it. It is important to ensure that Stephanie is never more than five or 10 minutes from her daughter, because those few minutes can make a big difference.
Next, it is time for Christine to eat her bagged lunch made by her mother, containing a certain amount of carbs and proteins. Her lunch has to be packed according to the daily activities in her day. On days when she is active, she needs a different balance of food. Christine later enjoys a midafternoon snack with her class.
After school, she does her homework, and gets her blood sugar tested at 5 p.m. She then gets an insulin injection in the arm and eats dinner. At 7:45 p.m., she gets tested again, then has a snack. Before she goes to sleep she gets another injection in the leg.
When Christine’s sugar is low, she immediately has a glucose tab. Her favorite flavor is raspberry.
Christine’s routine has to remain daily, and the family has made it their business to avoid any places that are not willing to accommodate. The entire family eats dinner at 5 p.m., when Christine needs to eat, and if they are invited out and cannot eat at 5 p.m., they simply don’t go.
The Kennys also give credit to the Ravine Drive School, where Christine attends first grade, for being so accommodating. The nurse has an emergency kit and snacks in her office, and the teacher keeps an emergency kit in the classroom, Stephanie said.
The Kennys also said that it is important that whoever is taking care of Christine is properly trained, and they are grateful that Christine’s teacher, Lori Thompson, was so accommodating.
“The teacher was fabulous and wanted to learn,” Stephanie said.
“They’ve done an outstanding job in assisting us. These folks have certainly risen to the occasion,” Chuck said of Thompson and the school nurse, Irma Gieb.
All in all, the Kennys want the public to know how serious juvenile diabetes is and that a cure is so close to being found. People have many misconceptions about juvenile diabetes, and often confuse the symptoms of type 1 diabetes with those of type 2. They want people to understand the severity of their daughter’s condition, and that there are ways to help. They also want to let parents of recently diagnosed children know that they are available to lend a helping hand, and their contact information can be received by contacting the JDRF.
The Kenny family has come a long way since that day in November 1999. Thanks to the Kennys’ positive outlook and approach to their daughter’s condition, Christine is a happy 6-year-old who loves to dance and play soccer and tennis.
For more information on juvenile diabetes, or to make a donation, call (800) 533-CURE or visit www.jdrf.com.