Friday, October 30, 2020

When life suddenly changes over, part I

Rufus with kid friendly diabetic supplies. Submitted

Rufus with kid friendly diabetic supplies. Submitted

By Gina Sisbarro

Meet Gina Dengler, Development Coordinator for the Juvenile Diabetes Research Foundation International and mother of Noah, age ten, who was diagnosed with Type I Diabetes in January, 2006. This is her story, although a personal one, it is also the story of parents, grandparents, brothers and sisters whose family member is diagnosed with this disease for which there is no cure at this time. It goes from helplessness and anger to hope and courage. Why Noah? Why any ordinary child leading an ordinary life?

Type I Diabetes is the most severe form of diabetes which cannot currently be prevented. It affects one out of every 30 Americans. Unfortunately, the rate of incidence is rapidly rising for children, believe it or not, ages 0-5. The question is how will a parent know if this disease has affected her child and what happens next? In Noah’s case, the symptoms started eight to nine months before diagnosis. “We knew something was wrong,” explained Gina. “He became very thin. He was extremely thirsty, constantly sweating and urinating more than normal. He complained of a dry throat, chapped lips and toward the end of that time began developing skin conditions. He would come home from school totally exhausted. I can’t tell you how many doctors we went to, even to the point of thinking he had a mental condition we needed to explore.”

It wasn’t until a co-worker suggested Gina test her son for diabetes that the condition was discovered. Although skeptical, Noah was tested just before his situation worsened and he was hospitalized for three days. This is where life “changed over” for the whole family. There is a clear and present grief process. As parents, Gina and her husband reviewed their son’s upbringing. What did they do wrong? What could they have done better? Was it anyone’s fault? Did someone in their family pass the disease down to their son? What they discovered is there is no prevention, no screening available for early detection and very little information for parents to educate themselves prior to detection.

Type I Diabetes occurs when the pancreas cannot make its own insulin needed to energize the body. There is no cure, only strict moderation of every piece of food or drink that enters one’s body. Noah at first went through a brief honeymoon period. For about six months he felt better after being sick for so long. Then reality sets in. You have to poke your finger at least 10 times per day to monitor sugar levels and every time you eat you need a shot. that works out to four to six times per day. To make matters worse Noah relapsed and had to be hospitalized for the second time in a year.

The hardest part is when Noah felt it was time to quit. He just didn’t know if he wanted to live his life like this, which includes constantly being monitored by a parent.. There are no play dates, sleepovers, birthday parties or all the fun things children get invited to because mom can’t leave him in the care of another parent which includes waking him up overnight to check his levels. Although this life is not out of “normal” reach, the child does not want to have his friends subjected to his routine. He is embarrassed. Soon the invitations stop coming and Noah becomes more isolated from his friends. Noah described his dilemma of having to deal with Type I Diabetes as “I’m in prison and don’t get time off for good behavior.”

So what happens now for Noah, for his family and the other 213 children diagnosed with Type I Diabetes throughout Lee and Collier County? Gina reiterates, “life suddenly changes over,it will never be the same for our family. Everyone sacrifices, including my oldest daughter. You have guilt when one child gets more attention than the other. I feel her needs sometimes get put on a back burner, not intentionally, it’s just that the other child needs constant care.”

Gina found herself becoming quickly educated into the world of Type I Diabetes as well as volunteering for the Juvenile Diabetes Research Foundation which eventually led to her current job with the foundation. What are her goals for her son, the foundation and every child diagnosed with the disease? “Ultimately, to find a cure. The other part is to prevent complications and find ways to make dealing with the disease just a little bit easier. Take Rufus the Bear for example. Every child diagnosed receives a KIDSAC. This free pack contains educational information about living with the newly diagnosed disease and Rufus. Rufus is a best friend to thousands of children around the world. He has injection and test sites on his cuddly little body. He sits at little girls’ tea parties, watches movie videos, joins children at dinner tables and gets plenty of hugs all day long. Noah, who is now ten years old, still keeps Rufus on his bed as a reminder of his best friend who still lives day to day trials and tribulations of the disease with him.”

On February 19, the Juvenile Diabetes Research Foundation will host its Hope Gala and is honoring one of Marco Island’s own, Mr. Jere Fluno. Mr. Fluno’s granddaughter, Lauren, was diagnosed in October, 1995. The family has a high stake in a successful search for a cure for Juvenile Diabetes and are longtime supporters of foundations in Southwest Florida and Chicago.

Watch for Part II: Honoree Jere Fluno and the JDRF’s “Find A Cure” program, in the next issue of Coastal Breeze News!

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