“Songs for Kaylen” – A Type 1 Diabetes Story – Telling it like it is!

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When a child is diagnosed with any disease, we as parents go through so many emotions.  The first being disbelief and fear.  As you adapt to the situation, as hard as it can be, we go through that “let’s fight!” stage and we never want to give up on our children.

So, that’s what we did.  For five years we poured our heart and soul into fund raising.  We went on the annual walk, made it to all the annual symposiums.  We had awareness jars placed at our local stores and pamphlets in the mail boxes.  We held our annual “Rockin’ for a cure” fundraiser with a live band and sold silent auction tickets and T shirts, 50/50 draws, etc.

Unfortunately we didn’t raise as much as we could have with our annual fundraiser in our small town so we decided to take it to the big city.  We decided to get a table at the annual walk so that we could pre-sell tickets to families who shared our struggle.  As what I thought was a simple formality, we sent an email to the charity to ask to book a table.  The answer we received changed my perception of selfless endeavors, fundraising and the future of my involvement forever.  We were told “No, it wouldn’t be fair to our sponsors”.

Now, the “sponsors” are the multi million/billion dollar companies who get rich off our kids and the disease that they are stricken with.  Now don’t get me wrong!  The products available do make Type 1 diabetes more manageable then ever before so I am very grateful!  But still!  Come on!  I could not convince the charity otherwise and the emails became defensive which had me completely at a loss for words.  I felt very betrayed. Sort of like that scene in Brave heart when Mel Gibson’s character realizes his best friend was fighting against him.  Completely bewildered.

What’s wrong with this picture?

A week later to add insult to my already confused mind, we received a notice from the charity excitedly exclaiming that a very popular Ice cream truck was donating .25 cents per Ice cream during the walk.  Isn’t that fantastic!  So, selling sugary Ice cream to diabetic children and profiting from those sales was welcomed with open arms.  A family wanting nothing but a table to sell tickets to an event where 100% of all proceeds were going back towards a cure was shot down!  The irony here is unbearable.

More suspiciously is this.  We were a family that did successful fundraising for 5 years and I never lifted a fundraising finger after that.  But there were no calls.  No, “We need you” or “Where did you go” emails.  It’s like we never existed and nobody cared!  The only thing I could figure out is that the machine wasn’t broken.  Every day a new child is diagnosed with Type 1 diabetes and every week there is a new family going through the “let’s fight!” process.  So, the charitable numbers are always on the rise and so the loss is insignificant.  Sad, but I believe true.

Songs for Kaylen,

After that ordeal I began a project called “Songs for Kaylen”. It was to be a charitable album to raise awareness and hopefully find a cure for Type 1 diabetes.  The only difference was that the money raised was going to go to a special fund and I was going to personally dig into who is doing research and the rest of the why, where, what and when’s related to the process.  Kind of a crazy big dream! I am positive that Dr. Frederick Banting and his assistant Dr. Best would be rolling in their graves if they new that almost 100 years has gone by since the discovery of insulin and the cure has yet to be found!

This doesn’t mean that I paint the entire fight for a cure with the same brush so if you’re reading this and sadly are going through the pains of a child with any disease please don’t be discourage by this story.  From my personal experience, I was done!  But, I am confident that their are so many people doing amazing work behind the scenes and research while selflessly and tirelessly working.  Maybe it’s the modern day politics and financial framework and formalities and the now lack of serendipity in the research labs – who knows!?  But that’s what I wanted to know if I could raise enough money with my project.

So you may be thinking now.  Happy ending! Right!?  Well unfortunately No!  When we watch the news we see mostly the bad stuff.  Good stuff rarely makes it on the news.  Good stuff does make it on shows like Opera and Ellen, but the stories that do surface however amazing are rare indeed so I’m guessing for every great story out there where the ending is “Happily ever after”, there are a hundred stories like mine where the road ends up in a bush full of thistles.

Songs for Kaylen ended up on the shelf with only now some of the songs ready for their debut and many needing more work.  For now I am not looking at this as a fundraising effort.  If I win the lottery tomorrow then philanthropy will play a big part of my life but these days I’m just like you.  Struggling to make that next payment.  I really don’t know what the future holds.  What I do know is that we can only do our best.  The machine is sometimes to big for the common man to battle.  This doesn’t mean that great things can’t be accomplished.  There are so many amazing people who prove me wrong every day.  I guess I just represent the percentage of the population who don’t make center stage because the fairy tale didn’t come true.

If I leave you with a quote from Susan Boyle from Britain’s Got Talent.  “But here’s hoping it will change”.

Thanks for your time!

Paul Denis

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