Tag: diabetes research institute

Years ago I had the wonderful experience to help two different families at two different times.  Little Anthony and Kevin both had cancer, incurable cancer.  The results were known and even though both gave a valiant fight and underwent almost every treatment available, eventually the battle was lost.

With each day that went by I witnessed their lives slipping away and even to witness them smile at their weakest moments were enough to brighten a day.  When a fund-raiser was completed and a check was presented I can still to this day hear Little Anthony’s (as his parents called him) voice in my head, “Damn, that’s a lot of money.”

When Rob graduated, I thought of Little Anthony’s family as they were both the same age and surely we have had the wonderful opportunity to witness and enjoy our son, they were not so lucky.

Years after I ran the event for Kevin, a woman stopped me in a 7-11 and she said, “Tom, you may not remember me.  I am Kevin’s mom and you helped us years ago.”  We hugged and she told me what was going on in her life and how much she appreciated all that we did. 

We were never experienced in any such way that compared us to what these families went through.

If you do not know about the so many pediatric cancers, count yourself lucky.  When it’s a terminal, malignant, progressive, and degenerative diagnosis; it is just overwhelming to watch, witness, and share.

I remember someone asking me about one of the organizations that grant a wish for kids with such diseases that Kevin and Little Anthony suffered with and if I thought kids with type 1 diabetes were eligible.

I answered ‘no’ immediately.  I answered no because I felt that if anyone on this earth wanted and/or deserved a wish to be granted; it would be these two little boys and their families.  I’m not comparing diabetes to cancer, and won’t.  But in as much as I completely understand what it is like to have two kids with diabetes, and I know all of the management needed; and know the fears; and just completely understand; I would never think for a moment that what we do on a daily basis was the same life threatening and terminal situation that would warrant a utilization of a granted wish.  Most important is that NO ONE ‘DESERVES’ anything; they are granted at the goodness of the person or organization granting them.

To me, TO ME, it just isn’t.
 
Is diabetes life threatening.  Yes it is.  Is it a life threatening terminal disease with no chance at a quality of life as others have?  No it is not.  

Now one can pick apart the words as life threatening and/or quality of life and try to make it a crystal clear-cut meaning but the truth is—-it isn’t crystal clear.  My kids do not have a life-like kids who do not have diabetes and neither do we as parents.  But we also do not have the same life as those who are literally dying with each day that goes by; they are not growing weaker with each day that goes by; they are not on a time-table that will snuff out their lives in six months.  Yes, I know that IT COULD be snuffed out; but it is not a predictable end.

Again, recently, someone asked me if I thought that our children are ‘deserving’ of a granted wish?  I  found that some parents were quite set in their thought process that an organization should be granting wishes to kids with type one diabetes.  No they shouldn’t.   Why?  Because they said they shouldn’t.

Now before some of you want to hang me; just keep reading until the end.

There is a Board of Directors that have set a criteria for these type of organizations and Make-a-Wish is only one of many such organizations.  But it is clear that if a child does not have a progressive, malignant, and degenerative disease; they do not qualify for a wish.  Quite simply; our kids do not.

There must be a line drawn that allows a gauge to decide who gets a wish and who does not according to the various groups I spoke to preparing for this article.  That line in the sand is not an easy one.  It is drawn because there MUST BE a divide and no matter where THAT DIVIDE is set, someone will asked it to be moved once again.  So most groups draw the line and do not move it.  It is not for a lack of compassion, it is an act of practicality.

Another commonality from the organizations is that there are not enough funds to grant all of the wishes that they would like to grant to those that fit the criteria they have set, much less trying to stretch the parameters to include additional children living with other diseases.

I’m not saying what our children live through is not horrendous, I’m saying organizations have the right to set their own criteria and it should be respected. Almost any group that is created, or has been created, was started because the group felt that the existing organization(s) did not fulfill the need adequately on what they found/deemed to be important.

So if you believe, and believe strongly enough, that children with type 1 diabetes should be allowed to request a ‘granted wish’, I would suggest that you begin such a group.  There are groups that create wishes from a life experience to supplies to clothing.  Why can there not be one for diabetes?  That is question for you to answer.

Kids with diabetes, in most cases, are not adequately considered for a college scholarship based on a disability.  Those that grant these scholarships grant them based on those who have overcome incredible odds; sounds like our kids doesn’t it?  But alas they are not considered in any place that I know of giving scholarships based on overcoming a disability; and feel free to enlighten me if I’m incorrect.

With that in mind, the Diabetes Scholars Foundation was created.  Guess what their number one criteria is?  Yup, you must have type 1 diabetes.  Now they could have spent years trying to get groups and organizations to grant a scholarship; or they could do something about it NOW.  In 2008 they gave 18 scholarships and in 2013 they gave 49.

So the point of my story today is not just about whether kids with type 1 diabetes are deserving of a granted wish; my point is that here is an opportunity to fulfill a need if you think it  is needed strongly enough. 

Years ago there was the American Diabetes Association; Lee Ducat thought there should be more focus from an umbrella organization to fund type one research; and she and her friends created (what is now called the) JDRF.  Barbara Singer and her friends believed that there should be place where actual science was being done solely dedicated to curing type 1 diabetes and they created the Diabetes Research Institute.

So if you think that something is not being done that needs to be done…….make that wish come true.

I am a  diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.