Grady's All-Stars is a trust set up to raise funds for the medical equipment, treatment and therapy of Andrew and Trent Grady. Drew 8, and Trent 5, who are brothers, were both diagnosed with a rare genetic and fatal disease called Late Infantile Batten Disease. This disease robs children of their physical abilities as well as their vision and causes heartbreaking debilitation. Life expectancy can be anywhere from 8-12 years of age.
Andrew Grady was born on May 18, 2004. Andrew was an extremely active little boy and loved running around the baseball field or riding his motorcycle up and down the street. Except for having a minor speech delay, he met all of his childhood milestones early. By the age of 2 he was hitting pitched baseballs and learning how to ice skate.
It wasn’t until May, 2007, that we became concerned that something was wrong. Drew was starting to drop his toys and yell at them as if he didn’t understand how it happened. Then he had his first seizure a few weeks after his 3rd birthday. In July of 2007, he had another major seizure at a baseball game. After having an EEG, it was determined he had epilepsy. Although we weren’t thrilled with this diagnosis we weren’t overly concerned either. After all, Drew’s dad had a form of epilepsy growing up that he outgrew.
During the fall and winter of 2007, Drew’s seizure activity increased in both severity and type and we struggled to find the right medications and a proper diagnosis. We started the Ketogenic Diet in April of 2008. As soon as we started the diet we saw improvement in seizure activity but there was no improvement in his EEG. In August of 2008, Drew had a Vagus Nerve Stimulation (VNS) implanted. We also saw improvement with this treatment. By December, 2008, we noticed that he was starting to lose some of his ability to pronounce words. He also developed problems with his balance and co-ordination and our once active child was barely able to stand without falling over. While many of these symptoms can be associated with the anticonvulsants that he was taking, I knew deep down that something was very wrong. We began to push for more testing.
In February, 2009, we took Drew to the Cleveland Clinic for a second opinion. Assessments were done, blood was drawn and previous tests were reviewed. We were then informed that the MRIs were showing significant brain loss and that it was possible that Drew suffered from some sort of progressive myoclonic epilepsy. It was a very long few weeks while we waited for those lab tests! When we got the call from the Cleveland Clinic we knew it was bad. Despite that premonition, nothing can prepare you to hear that your child will not get to grow up. In February, 2009, on a Friday night, we were told that Drew has late infantile neuronal ceroid lipofuscinosis (LINCL), or, more simply, Batten Disease. We were devastated.
A few weeks later we decided to test Trent, Andrew’s younger brother, for the disease. One can never fully prepare himself for the news that not one, but both of your children have this terrible disease. Trent just turned 5 on July 10, 2012, and he has a speech delay, seizures and he is starting to lose the ability to walk. Trent loves to watch hockey and swim with his neighborhood pals and help his brother as much as possible. It is heart breaking to watch Trent push his brother’s wheelchair around knowing that one day it will be his. When I thought of hand-me-downs I was thinking shoes and clothes, not wheelchairs and walkers.
Andrew is now 8 years old and just started third grade. He never ceases to amaze us. His strength is an insperation to everyone that enters his life.
We decided not give up the fight for our two precious angels but we will need help along the way. There are several research studies that we are working to get the boys involved in, but these studies are mostly privately paid. We also learned that we must fight for the boys to receive services and equipment that they desperately need and sometimes the battles are not won. Only certain equipment is covered by insurance.
Our goal is to raise awareness about LINCL and Batten Disease as well as help fund the treatment and services that our children so desperately need.