The Story Behind the Foundation

The purpose of this foundation is to simply (but, not so much) save lives and prevent anyone from going through what my family and I went through (and live daily) on July 18, 2011.Our day began uneventfully as we rushed to get out children to their summer activities. Our three boys had soccer camp and one of our girls was headed to a half-day dance camp.  We were all tired, and a little cranky, having attended the New England Revolution’s “Futbolito” Soccer Tournament the day before. I drove the girls and my husband, Ralph, took the boys.  In my haste I never said “bye” or “I love you” to the boys (life lesson here). Rush rush rush. Can’t be late.

Ralph and I returned home, grabbed some coffee, and discussed how we were going to start “enjoying” our kids more and be better parents.  Then, the phone rang. It was our oldest son, “Josh had a seizure, come quick!”. I screamed “not Josh!”. I can still hear that panicked, squeaky voice in my head today.

We grabbed our youngest, and drove to the school where the camp was being held, only a short distance from our home.  We ran up a gravely hill as fast as our legs would carry us. I remember looking down at my stupid flip-flops, feeling that they were slowing me down. I have since discarded them.

There he was. Our Josh was laying there on the turf field. Our boys, and those attending the camp saw him fall chin first. The EMT’s were there, repeatedly shocking our sweet, dirty, twelve-year old with a defibrillator.  They continued this on the ride to the hospital (I prayed and watched the whole ride sitting backwards in the passenger seat) and the doctors took over in the ER.  Joshua (Moose) Daniel Thibodeau was pronounced dead one hour after his collapse on the soccer field.
Could Josh’s death have been prevented? Maybe. Josh exhibited some shortness of breath while running and playing soccer. He was given an inhaler and being treated for exercise induced asthma, which he didn’t have. He thought this “helped a ton”. Once or twice he complained of a brief chest pain, but replied when asked, “yeah, I’m fine”.

Josh’s autopsy (I loathe that word) results came back with the diagnosis of hypertrophic cardiomyopathy or HCM. How could we not know he had a heart condition? One family member, a R.N., said to me “you just don’t go there” with a seemingly
healthy child. Meaning, that first one rules out pulmonary (or breathing) causes. Another thought was “maybe he’s just out of shape?”. I’m not sure when and if I’ll ever be able to forgive myself for thinking that.

What if Josh had an ECG or echocardiogram as a routine screening tool or answered a questionnaire that’s purpose is to detect potential heart problems in student athletes?

What if…?

Our story, unfortunately, doesn’t end there. A sibling of Josh’s was diagnosed (based on ECG findings and genetic tests) with Long QT Syndrome, a COMPLETELY DIFFERENT potentially fatal heart arrhythmia. Are you kidding me? What if he DIDN’T have an ECG?
We will never know if Josh’s life could have been saved, but it most probably could have been prolonged.

I’d give anything to see his smiling, freckly face one more time…or for one more day.

Deb Thibodeau