Why I Extra Life
October 1, 2015
Instant gratification. Whip out your smartphone and any number of inquiries can be answered instantaneously. That is the world we have grown accustomed to.
But in 2009, came the hardest question I’ve ever asked: Why is my first born son developmentally delayed?
Imagine my frustration. This was the 21st century. I was confident that an answer could be found in 0.52 seconds. Well, as it turns out, no amount of Googling answered that question. The internet doesn’t know why. More accurately, Google knows WAY too many causes for developmental delay. Having a thousand reasons does not provide a clear path to treatment in the way a single cause can. Three years is a long time to seek an answer.
When Liam was 5 months old he was determined to be eligible for a program called First Steps. He was a little delayed against “typical” milestones, but what importance can we put on anything when it could disappear or completely change within a week. He was 5 months old for Pete’s sake, so much can change in a day!
The next two and a half years were a whirlwind of occupational, speech and physical therapists, home visits, progress notes, mid-year reviews, doctors’ appointments, tests, evaluations, physicals, well baby visits, etc. I thought it would never end.
This was far from instant gratification.
Around that time, my wife’s best friend, Kevin, told me about a fundraiser he was doing. He was getting 15 of his friends together and participating in a 24-hour nationwide Extra Life gaming marathon, with all sponsored donations benefiting our local Children’s Miracle Network Hospital. (He had me at “video games” and “24 hours” because during this challenging period, I would often play video games to give my mind a break from the stress of the situation.) Indiana only has one CMN Hospital: Riley Hospital for Children. I had heard of Riley and knew that they were one of the best children’s hospitals around.
Unbeknownst to me, I would be given a very compelling reason to become more involved in Extra Life.
It was about a year later that a Pediatric Neurologist from Riley finally put an end to the years of questions about Liam with a single answer. Dr. Laurence Walsh ordered Liam a non-routine blood test for very specific genetic abnormalities. The results came back: my son has a rare and specific genetic mutation whose symptoms exactly match his etiology. Whoa. After hearing 100 times, “Well, we’re not really sure…” this was like a succession of nuclear explosions: doubt, inquisitiveness, confusion, elation. Had we really found it? Had a doctor we had only seen twice found the answer? Yes.
And that, gentle readers, is dramatic irony.
Dr. Walsh prescribed Liam something called ABA therapy to help him with his newly garnered diagnosis. A new mission was begun. A mission with much more hope and direction and focus. A new purpose of helping Liam in the special way he needs. My energy was renewed. The dried out well I was once dipping into to find minute amounts of hope, energy and will was now flooded with a brand new underground spring. Liam and I owed a new chapter in the book of life to this incredible doctor from this incredible hospital.
I decided that Dr. Walsh and Riley Hospital and all the kids and parents who are still seeking answers needed my help. Through Extra Life, I had found my mission.
I am going to be an Extra Lifer for life and I am going to volunteer to make this organization as astounding as possible. I am in my second year as the Head of Public Relations for Extra Life’s Indianapolis Guild and am committed to making it the premier fundraiser for CMN hospitals.
Please join me in this really worthy cause on November 7, 2015. The kids need your help. Liam is my inspiration and I hope he inspires you to saddle up again for another, better year of Extra Life. Together we can help to change kids’ lives.
Together we can turn questions into answers.
Click here to learn more about participating in or donating to Extra Life, which takes place on November 7.
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