Diabetes diagnosis leads Hampshire family to increase awareness

• Reprints

Updated: November 18, 2011 2:25PM

HAMPSHIRE — Finding out a loved one has a debilitating disease is shocking at any phase of life.

When the sufferer is a child, the news is life-altering for the whole family.

This is a story about one family’s struggle with a diabetes diagnosis and how they have turned the event into a fight to raise awareness and channel energy into supporting research efforts that may one day lead to finding a cure.

Payton Johnson is a bright, energetic child of 3 who looks forward to dance class and knows all the names of the Disney princesses. She adores her older brother, Michael, who shows her funny video clips on his iPod and is an expert at distracting her when it’s time for an injection. Like other toddlers, she spins and twirls when she talks; her light brown hair falls in ringlets over her shoulders as she plops down on the floor to play.

But for the Johnsons, there has been a wave of concern over Payton in recent months when they learned their little daughter has Type 1 juvenile diabetes. Parents Ken and Amy Johnson were shocked by the diagnosis, at first thinking their daughter was having symptoms of a urinary tract infection.

But when preliminary tests revealed Payton’s glucose levels were more than five times higher than they should be, and doctors at the Delnor Express Care facility in South Elgin ordered Payton and her dad to travel to Children’s Memorial at Central DuPage Hospital via ambulance that same day, they knew the situation was far more serious.

Faced with a difficult diagnosis, plus an onslaught of information from the diabetic education team at the hospital and the knowledge that they would be responsible for giving their child daily injections of insulin and round the clock monitoring of her sugar levels, the Johnsons felt isolated and very overwhelmed.

“Before we could even leave the hospital with Payton, we had to give ourselves and each other a shot (of saline) to show that we had learned how to do it. I thought Ken would be able to do it, but there’s no way I could,” Amy said, admitting that when she tried, she jumped and actually stuck her husband twice with the needle.

Almost as bad as the worry for their child was the feeling of isolation the couple felt.

“We felt like the only ones in the world that had this,” Amy said.

Their education and experience over the past several months has made the whole family virtual experts on tracking carbohydrates and mathematically converting them to calculate the dietary impact on Payton. Even eleven-year-old Michael is prepared for the day he might have to give his little sister an emergency insulin injection.

Soon Payton’s condition will be managed with the help of an insulin pump that will automatically calculate the precise amount of insulin Payton needs based on the number of carbs she consumes.

Now that her condition is under control, the Johnson’s are looking outward, beyond themselves, to help others who are going through the same thing. One of the ways they are doing that is by participating in the Juvenile Diabetes Research Foundation’s Walk to Cure Diabetes fundraising effort which raised $86 million last year for research.

Team Payton will be at Busse Woods Forest Preserve in Schaumburg on Sunday, Oct. 2, for the walk and has already raised $1385 with a goal of $1500 for the cause. They also hope to let others know they are not alone.

“Maybe this will give a little bit of hope to someone who is going through this,” Ken said.

“I just thought spreading awareness for other people. If somebody else is out there, maybe they don’t have to feel like they are so alone,” Amy said.