Tuesday, August 12, 2014

Stepping Up

I overheard the Senator ask the CDE (Certified Diabetes Educator) with genuine concern in his voice, “But it is getting better, right?  There are better treatments out there now.”  There to receive a “Hero” award for helping the Juvenile Diabetes Research Foundation (JDRF) obtain much needed $150 million dollar funding, he had it right that this time in history, technology is making it possible to more tightly manage Type 1 Diabetes, an autoimmune disease for which there is currently no cure and no definitive cause or prevention. 

While a cure is dangling out there just beyond our reach, parents hack iPhones to get a readout of their children’s blood glucose remotely because T1D is always lurking, we connect our children to devices, take blood samples a minimum of eight times a day not to mention multiple injections or pump insertions, getting up multiple times in the night to make sure their child's blood glucose doesn't slip dangerously low, there are more and more children being diagnosed at an alarming rate.  Dr. Kupper Wintergerst, a leading endocrinologist and researcher for T1D, indicated at a recent JDRF chapter meeting that the fastest growing population of newly diagnosed is among the very young.  Babies, toddlers.  Think of it – poking your baby’s finger over and over throughout the day, followed by multiple injections.  Babies.  It used to be that T1D mostly reared its ugly head during the early teen years, hence the old moniker of “juvenile” diabetes.  In today’s world, T1D is still ahead of the race, claiming more each day, in fact during the next hour and every hour of every day, 3 or 4 families will be diagnosed with Type 1 diabetes, changing their lives forever. Those diagnosed will range in age from newborn to over 40 years old.

Even while at this reception, one of the moms, there with her T1D diagnosed son, worried about her younger daughter.  Home with the “flu”, the symptoms were not unlike those that her son exhibited prior to diagnosis.  I heard she had taken her to the hospital last night “hoping” her daughter had the flu because the alternative was shattering. 

While I can tell you Type 1 Diabetes has brought some “gifts” and is making me a better parent, the balance of the catastrophic changes to my son and our family outweigh the good.  I don’t mean to whine – I am more than grateful that I live in the United States, that we have excellent medical care and insurance, and that my husband and I are capable of making life as normal for our son as possible.  But we are of the privileged.  Not everyone is, and for them and us and for my son, I will be writing and asking you to consider learning a little about the horror of T1D so that we can continue to obtain funding to find a cure, or at the very least, prevention for my grandchildren.  (There I a genetic link to T1D and autoimmune diseases.)

My son would like that I stay silent and that no one “know” about his disease.  He is twelve years old, so of course he doesn’t.  Yet, the only way to beat it is to embrace it and find people, like the Senator, that are willing to find the funding for continued research.  My son has stepped up, been on the news twice already, and is going to be walking with us at the JDRF Walk to Cure Diabetes.  My son is “my” hero, because despite the difficult turn his life has taken, the daily obstacles and risks, the long term possible complications, he is standing up and walking forward. 

I’m hoping that you might consider walking for a day in our shoes by joining us at Churchill Downs on August 23rd.  If you already have plans, maybe you could send William an encouraging note (I’ll share the comments with him) or make a $5 pledge so that he knows you walk with us in spirit.  I intend to never give up and always to fight.  I hope you’ll join us.


Fatcat said...

I'm sorry that you are having to become a better parent in this difficult way. I can't believe your son is 12 already. I read your blog a long time ago and he was little. :-)

Have you looked into going gluten free to help with diabetes? http://www.webmd.com/digestive-disorders/celiac-disease/news/20081210/celiac-disease-type-1-diabetes-linked

Wishing your family the best.

Junosmom said...

Hi FatCat, I remember you and thanks for reading! Yes, I'm aware that there may be a link between other autoimmune diseases, including celiac, and T1D. I recently attended a talk on the latest research which suggests that autoimmune may be linked to bacteria in the gut and how it interacts. It may also be linked to the enterovirus. This problem could result in a person developing one or more autoimmune disease, but not necessarily that one autoimmune causes another. From listening to this top researcher, they are not yet ready to say what definitively causes T1D but are getting closer. There may even one day be a vaccine (against enterovirus) to prevent it.


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