A Parents Biggest Nightmare

We knew.  We knew it was a possibility.  For either Jake or Abby, one or the other.  Or both.  And both is still not out of the question.

We intended on participating in the TrialNet study, with my old friends from Children’s Hospital of Pittsburgh, because we wanted to give back, we wanted to stay aggressive with our kids IN THE EVENT something were to happen.

The TrialNet study (http://www.diabetestrialnet.org) is a prevention study that is broken into two phases:  1. Observation, and 2. Active Prevention.

Abby has been in the study since 2010 and gets annual blood work to test for the Antibodies that are known to kill islet cells and cause T1D.  The antibodies are called: GAD65, ICA, ICA512, and MIAA.

As a child of someone with T1D, your chances of developing T1D is 4-5%.  Once you produce two (2) of these antibodies, your chances go up to 50%.  Both of my children have been developing two (2) antibodies for the last couple of years.  At this point, Abby’s body is attacking itself.  The immune system is producing four (4) antibodies that are very successful at killing islet cells.

It is not a matter of if, it is a matter of when.  What do you say to your 7 year old daughter about this?


Reality –  There’s an incredible amount of emotions that my wife and I have experienced over the last month since we received the results.  And she hasn’t even been diagnosed yet.  It could happen in the next day, or not for 10 years.  The likelihood is that it will happen sooner than later, but there is no way to know.

The reality is that my wife and I have the ability to get our head wrapped around the idea of her living with T1D.  We are not going to be surprised by the diagnosis, and we can plan (as much as one can) for the day when it happens.

The reality is that there is better information and better technology than when I was diagnosed in 1982.  Outcomes for those living with T1D are fantastic.

The reality is that none of this matters to a mom of a T1D at 2am when they are testing their child’s blood glucose levels.  None of this matters to the child with T1D when they just want to fit in.  None of this matters to a women with T1D who wants to have healthy children of her own.

Parenting a T1D:

I have had a unique perspective, living with T1D for the last 30 years.  However, I have not had my mother or father’s experience.  I have never had to go to work after being up half the night worrying about my child’s high or low blood glucose levels.  I have never had to have a conversation with my daughter about how to talk to their coach about having T1D.  I have never had to support her as she wonders if boys will ever ask her out on a date.

Truth is, my wife and I have a lot of parenting to do.

The Prevention Part of the Prevention Study:

TrialNet’s active prevention portion of the study randomize’s Abby into one of the two groups in the study: active drug, or the placebo.  It is double blind, so we will not know what she is receiving.  The drug is oral insulation, and taken orally every day, has shown to have the ability to postpone diagnosis up to seven years.

Oral insulin supposedly acts like a vaccine to temporarily keep the active antibodies from destroying the islet cells.

I HOPE that this is all for naught, and my daughter is the 1:1,000,000 (I’m making this number up, as I hope there’s a chance it won’t happen) that doesn’t get the disease.

I HOPE oral insulin is a good answer for my daughter.

I HOPE I am prepared to help my daughter navigate the world of living with T1D as my parents did for me.

I HOPE for a cure.  As soon as we can get it.  But until then, we will fight to fund the research needed to improve care, and possibly prevent the diagnosis for all those who are diagnosed or will be.


Leave a Reply

Your email address will not be published.