Six years ago, my granddaughter, Kenzie, was diagnosed with Type-1 diabetes. It was heartbreaking. From that day forward, her life has depended upon meticulously monitoring everything she does and every single thing she eats and drinks and then taking on sugar and carbohydrates or injecting the proper dosage of insulin to compensate. She will do so every moment of every day for the rest of her life.
Type-2 diabetes is caused by lifestyle decisions such as a bad diet and insufficient exercise. Most contract it as adults. No one knows, however, what causes a child’s body to suddenly kill cells in the pancreas that destroy its ability to manufacture insulin. Between 2001 and 2009, the incidence of Canadian children under 19 falling prey to Type-1 diabetes has increased by 21%. The cost for Canadian taxpayers is $16.9 billion. We are in a silent crisis.
Kenzie is now 11 years old. She is a healthy, happy little girl who enjoys hockey, soccer, and horseback riding, plays the trombone, and, due to years of French immersion, is fluently bilingual. I am exceptionally proud of her and of the fact that she has steadfastly refused to allow diabetes to restrict or define her.
Kenzie has worked to support the Juvenile Diabetes Research Foundation (JDRF). For over 40 years, the JDRF has led research in Canada and coordinated with efforts around the world to help those living with type-1 to lead healthy normal lives through developing new technologies and, ultimately, to find a cure. Kenzie has worked to support the JDRF. She has raised funds through her participation in JDRF Walks for the Cure in Peterborough and Toronto. She raised more through running a race on Ottawa’s Marathon weekend. Kenzie has organized and run JDRF pop-up lemonade stands. She has been interviewed by local media and on a national CBC Radio program. And now, she is helping to organize a fund-raising dance.
On Saturday, November 2, at Lakefield, Ontario’s Royal Canadian Legion, Kenzie will speak at a dance at which people in her community will gather to enjoy an evening of music and fun while raising money and awareness of Type-1 diabetes. Kenzie is doing what she can to live a normal healthy life and helping others with Type-1 to do the same. I am proud of her. I am proud to help her in her efforts to help others.
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It’s not fair. In fact, fair is the last thing it is. A happy, witty, intelligent, empathetic seven-year-old child bursts with life. She is fun and funny. She is gentle and caring. She loves the roughness of hockey and the sweetness of a frilly new dress. She loves catching bullfrogs and reeling in bass and yet trembles at the sight of a spider. She loves corny jokes and bouncing on her trampoline and quietly contemplating books beneath a blanket-fort. She is perfect. But then, she is not. Last year her pancreas died.
No one knows what causes type one diabetes. It is not like type two, which is caused by genetics or a bad diet or lifestyle. Doctors guess that a virus may be the culprit. The virus leads the body’s immune system to attack the pancreas, leaving it unable to produce insulin. Insulin is the hormone that regulates the sugars we eat and allows them to enter our cells and produce energy. But without the pancreas working as it should there is no insulin and so sugar levels in our cells go wild with the transformation not happening.
Until the 1920s, children around the world with type one diabetes were dying by the millions. A Canadian surgeon named Dr. Frederick Banting read German research and came to suspect what we now know. He convinced University of Toronto professor John Macleod, a leading diabetes researcher, to give him money and a laboratory. Working with a medical student named Charles Best, Banting began experiments first with dogs and then with cows. They found that extracting insulin from a healthy pancreas and injecting it into animals that had their pancreas removed controlled the animal’s sugar level. It was an astounding discovery.
Banting (right) and Best. Photo: U. of T. Archives
Leonard Thompson was a 14-year-old old boy. He was skeletal thin and unable to stand or concentrate. He was near death. Leonard and his parents agreed that he would be Banting and Best’s first human test subject. He was injected with insulin. Within a few minutes he smiled for the first time in days, sat up, and wanted to eat. It was nothing short of a miracle. Other test subjects saw similar results. Child after child was invited back from heaven’s gate.
The 1923 Nobel Committee awarded Banting and Macleod the Nobel Prize in Physiology or Medicine. Banting shared his prize money with Best. Banting was told to patent his discovery. He said no. He did not want to profit from something that he wanted only to help children. Companies rushed in and soon insulin was being injected into young arms and saving lives.
It would be nice if the Banting and Best discovery was a Hollywood happy ending but it is still too early to cue the violins. Insulin injections manage the disease but still do not cure it. The management is tough. Picture yourself having to use a small instrument that jabs a sewing needle into your thumb, then squeezing to bring forth blood. I’ve done it. It hurts. Now picture doing that five to eight times a day. It hurts every time. Now picture your Mom or Dad waking you up in the middle of the night to do it again. Now picture yourself being injected with a needle, akin an epi pen, twice before breakfast, once at lunch, once at dinner, once before bed, and then more times depending upon what all the blood tests suggest. Imagine doing that every day for the rest of your life. How do you do that as a child at school, at summer camp, on camping trips, at sports tournaments, at restaurants, at birthday parties, at slumber parties, and at all the other times and places where you just want to be a regular kid eating kid stuff and doing kid things?
Being a parent is hard enough. Now picture a situation where you do everything perfectly. That is, through steely, relentless diligence your child eats perfectly, carbohydrates are counted, exercise is monitored, blood tests are taken and dutifully recorded, urination is tracked, headaches, dizziness, and fatigue are noted, the insulin levels in all the needles are carefully measured and administered, and yet, despite all that and more, in the middle of the night, your child’s sugar level crashes so low that she falls into diabetic seizure. It looks like epilepsy. If not discovered, discovered while you are asleep yourself remember, and then quickly addressed, it could lead to a coma and – it is too horrifying to contemplate – death.
There are diabetic associations in countries around the world. They help young parents to help their children. In cities and towns throughout Canada the Telus company generously supports the Junior Diabetes Research Foundation Walks for the Cure. Money and awareness is raised along with the hope that someday a cure may be found. Someday.
Meanwhile, my granddaughter carries on because that is her only option. She is fun, witty, clever, kind, creative, fearless, and quite simply the bravest person I know. I am in awe of her. Last Saturday I donned a purple tee shirt emblazoned “Team Kenzie Mac”. She and her family walked at our local Telus Walk for the Cure. We are her team. Everything else can wait. Everybody else can wait. Nothing else matters. We were there for her for the walk in the rain, we are here for her now, and we will be here for her always.
May I live to see that day that the work begun so long ago by Banting and Best is completed so that no child need suffer, that no parent need suffer, and that type one diabetes is cured, once and, I pray, for all.