Jack was born with a life-threatening heart rhythm condition, Cathecholaminergic Polymorphic Ventricular Tachycardia, CPVT for short. It is a potentially fatal, adrenalin-induced arrhythmia that for Jack is currently well controlled with medication and a pacemaker. Jack is supposed to avoid stress, exercise and emotion, easier said than done. The last eighteen years have been less than a smooth ride, but they have taught me so much and have brought me to where I am today.
Jack takes medication twice a day that causes him to feel tired and cold. Before we were able to find a medication regimen that worked, CPVT caused Jack’s heart to stop multiple times resulting in him passing out and causing a lack of oxygen to his brain. He is currently 18 but cognitively and socially is equivalent to an average 12 year old. He is not able to play most sports and in elementary school did not have many friends. Jack was the kid who would sit alone in the lunchroom and did not get invited to birthday parties or play dates. His peers did not understand him and parents were afraid of the responsibility of having him around. As parents, I know you can understand the devastation I felt as his mom, not only surrounding the fear of having a child with a heart condition but the sadness I felt watching him struggle physically, socially and emotionally. There was nothing I could do to fix any of it.
In the fall of 2009, the mother of a child in Jack’s class approached me. She invited me out for lunch. At lunch she shared that she was on the Board of Directors at Make-A-Wish Vermont. She had learned of Jack’s heart condition, her son also had a heart condition and was a wish recipient. She told me that she thought Jack would be a great candidate for a wish. I was shocked beyond words and I was angry. My child was not dying. This is the one club you do not want your child to belong to no matter how amazing their mission is. She quickly informed me that many years ago the Make-A-Wish mission had changed. It was no longer a wish for terminally ill children. It was a wish for children with a life-threatening medical condition to enrich the human experience with hope, strength and joy. I was still not sold. It took me weeks to even share this idea with Jack’s dad. We finally agreed we would leave the decision up to Jack.
Jack ultimately decided to receive a wish and it changed our lives, for the better, in more ways than I ever thought possible. At the time the wish process began Jack was studying volcanoes in school and decided that his wish would be to see a volcano up close and personal. Make-A-Wish Vermont sent my family of five on an all-expense paid trip to Hawaii. Shawn and I could have saved and taken Jack on a trip to Hawaii but it NEVER would have been the same experience. From the moment the limousine showed up at our house to take us to the airport to the moment we touched back down in Burlington, Jack was KING of his world. For the first time someone other than Shawn or I acknowledged that Jack had gotten a raw deal and he deserved a break. The memories we made in Hawaii are ones we will cherish forever. The wish experience turned our lives around. When Jack’s peers learned he was receiving a wish, for the first time they envied instead of pitied him. They had something to talk to him about and Jack had something to share. He started to raise his hand in class, sit with friends at lunch and he gained the self-confidence to start participating in extra-curricular activities. The trip to Hawaii was AMAZING but it was what came after the wish that was the greatest gift we could have ever dreamed of.
Jack’s wish was a game changer. I know he would not be the person he is today without Make-A-Wish Vermont. We continue to be a part of the Vermont Make-A-Wish family.