When Chris and Cara Christopherson got the diagnosis that their daughter had Type 1 diabetes, they were about to be introduced to their new life, one that bore no resemblance to the life they had known so far.
Just before daughter Haley’s third birthday, the symptoms began. Night sweats, frequent and painful urination, always thirsty, exhaustion.
“She would be active and then she would just crash, almost like she was unconscious,” says Chris. He and Cara thought their daughter might have a bladder infection.
“What was really happening was something called ketoacidosis, where her blood sugar was so high that her body was telling her to drink as much fluid as she could, trying to flush all the sugar out of her system. Acid was building up in her blood, and the effects of that can be devastating.”
So too are the life-altering realities of a diagnosis of Type 1 diabetes (T1D), not just for the child, but for the entire family. Type 1 diabetes is the second most common chronic disease in children, second only to asthma, and the cause for the onset is unknown.
“It’s changed our lives immensely,” says Chris. “We not only have to check her blood sugar anywhere from 10 to 20 times a day, we have to account for everything she eats and have a carbohydrate count so we can give her the appropriate insulin to maintain a healthy blood sugar.”
That means every time Haley eats lunch or a snack at school, her blood must be checked, and also before she gets on the bus and when she arrives at school. If a nurse is not available, one of her parents has to be there to monitor her throughout the day.
When one thinks of diabetes, one imagines daily injections. Chris says they are very fortunate that their insurance company approved an insulin pump for Haley, even though she was below the age of what they would normally require. That means she wears a fanny pack with an infusion set that adheres to the skin and has a small needle that pricks under the skin. Her glucose meter tells the pump what the reading is, the parents enter the carbohydrate count based on what she’s going to eat that day, and pre-program the pump to supply the appropriate level of insulin. Every three days, they have to move the needle.
“She always has the needle in her, and she will live with that for the rest of her life, or until there is a cure,” says Chris, noting that they try to come up with ways to entertain Haley during the change, because it’s so painful.
“We give her a phone and let her play a video game, and we’re fortunate to have numbing cream to apply to the site to minimize the discomfort,” says Chris.
Haley has three sisters, and they have all learned to be aware of changes and let mom and dad know when there are tell-tale changes in her behavior.
There are dangerous health effects inherent with wild swings in her glucose levels, including blindness, extremities circulation issues and heart disease.
The family has had to change a lot about the way they eat and how they prepare food.
“You have to calculate for every ounce she eats, and what the carbohydrate count is for every bite of food,” says Chris. “This has been life-altering, not just for Haley, but for the whole family.”
When Haley was diagnosed, Chris and Cara spent three days at Valley Children’s Hospital learning about the disease and coming face-to-face with what would become their “new normal.”
“It’s the loss that never goes away,” says Chris. “It’s almost like they died, but there’s never any closure. You feel for them and what they’re going through, and then you start learning how this is going to affect them the rest of their lives, and the dangers of all the adverse effects if it’s not managed well. As a parent your heart just starts tearing.”
The support groups for parents, families and kids offered by Valley Children’s Hospital have been a godsend for the Christopherson family, allowing kids to get together with other kids who are dealing with T1D, and families who are learning how to cope with their new reality.
“We found that it kind of happens this way for everybody – you go through denial, then you’re just overwhelmed, and you just try to survive. We did that for about the first year; we were just trying to cope and survive. Now we’re getting to where we can deal with it, we can talk about it, we’re learning more and trying to get more involved to get the education out there.
“This is an epidemic; it’s second only to asthma, and everybody knows how bad asthma is. But with asthma, you may only have effects at certain times, or on bad air days. Diabetes affects every part of your life for the rest of your life.”
Chris says that even with the mortality being four times higher in the Central Valley than it is in the rest of California, there’s a huge lack of information and awareness on what Type 1 diabetes is. He and his family have joined in the effort to find a cure for T1D in Haley’s lifetime.
“That’s why we’ve taken this on. We want to make a difference, not only for our daughter, but for anybody. We’re living through the changes and how it affects our lives, we want people to not only learn from the trials we’ve had and hopefully not have to live through it themselves, but to have the information and the support and the education out there, so we can change the lives of those kids and create a better opportunity for them when they’re at home, when they’re at school, when they’re playing sports, so they can live a normal life. As normal as they can.”
Haley, who is now 5 years old, got up at a Town Hall meeting in Yosemite Lakes Park last month to invite people to participate in the JDRF Walk To Cure Diabetes, happening Saturday, Mar. 29, in Woodward Park in north Fresno.
As it says on the Team Haley JDRF page:
Haley is proud to speak with people about her diabetes. She doesn’t let it be known when she is having a tough day, she is the bravest 5 year old we know. Haley is always happy to meet another young person who shares her lifestyle. There is a comfort in knowing she isn’t alone.
We are asking that you join us in our effort to raise awareness and support research to help find a cure for Type 1 Diabetes. We would appreciate any participation in supporting Haley and the continued research to find a cure. We will be participating in the Fresno area walk at Woodward Park on March 29, 2014. Please read about JDRF for more information. Please contact us if you would like to purchase a “Team Haley” walk shirt, at 559.280.4141
We ask that you keep Haley in your thoughts and prayers. We are so grateful for your support.
With our sincere thanks,
Chris and Cara, Emily, Lacey, Haley and Molly Christopherson
If you would like to join a team or create one of your own, please visit the JDRF (formerly Juvenile Diabetes Research Foundation) website. If you can’t participate in the walk, but would like to ensure that a cure is found in Haley’s lifetime, please make a donation in any amount to Team Haley or to JDRF. To visit Chris’s page, click here.
From the JDRF website:
The JDRF Walk to Cure Diabetes is an impactful way to raise money for critically needed type 1 diabetes (T1D) research and show your support for the millions of people affected by this serious disease.
Type 1 diabetes is an autoimmune disease in which a person’s pancreas loses the ability to produce insulin—a hormone essential to turning food into energy. It strikes both children and adults suddenly and is unrelated to diet and lifestyle. It requires constant carbohydrate counting, blood-glucose testing, and lifelong dependence on injected insulin.
With T1D there are no days off, and there is no cure. That’s why JDRF holds more than 200 Walks across the country every year to raise money for JDRF—the only global organization with a strategic research plan to end T1D.
Thank you for your support of the JDRF Walk to Cure Diabetes! Together, we will turn Type One into Type None.
Editor’s note: Chris Christopherson is a Battalion Chief at the California Department of Forestry and Fire Protection (Cal Fire)