Our family started like something out of a picture book. Dan and I met in college and began dating 5 years later (THAT is a good story that I won’t bore you with now, but if you pour me a glass of wine I promise to share). I was an art teacher and Dan was working in finance. We fell in love, got married and when I got pregnanat we moved from our tiny apartment in Brooklyn to a four bedroom, center-hall colonial in Maplewood, NJ. The house and our lives were perfect.
Jack was born healthy and strong in the summer of 1998 and his sister, Anna, arrived 22 months later to complete our family. Dan’s career took off which allowed me to stay at home with the kids and run an expensive photography business (expensive for us, not my clients). Both the kids thrived as they each completed pre-school and started elementary school. Our family started to slip into typical suburban life when in the fall of second grade, Jack started to unravel.
It took months, a half dozen doctors and learning specialsts before we finally got the right diagnosis. Jack had Adrenoleukodystrophy (ALD). If you ever saw the movie Lorenzio’s Oil — it’s that disease. It’s a disease that (in the childhood form) generally only effects boys (usually between the ages of 6-10), and is characterized by the breakdown of the myelin in the brain. Without treatment the disease progresses quickly, stealing everything from the child before leading to death.
The only way to stop ALD is through a stem cell transplant and on May 30, 2007 (just one month after his diagnosis) Jack received a transplant. He spent 100 days in the hospital that year and came close to death more than once, but he survived. The transplant worked and we brought Jack home in August, 2007.
We thought stopping the disease and bringing Jack home would be the end of our story, but it was just the beginning. ALD stole a lot from Jack before the transplant did it’s magic. It stole Jack’s ability to talk and enjoy any amount of independence. He still has a tube in his belly for hydration and requires medication three times a day to live. He cannot bathe himself or feed himself or toilet himself. “Multiple disabilities” is what his school district calls Jack’s differences. I guess there is no simple way to describe his situation.
It took our family a while to adapt to our new lives, but we’ve finally accepted our challenges. We’ve also learned to acknowledge our gifts — friends, family, health (we know a lot of other ALD boys who have not been as lucky as Jack), financial comfort (don’t laugh, having some extra $ does make things easier), and most of all Jack’s smile. ALD managed to take a lot from our family, but Jack never has lost his sense of humor or his beautiful smile. It’s his smile that keeps us going. That’s the “smile” in “Smiles and Duct Tape”. The “duct tape” is all the other stuff we need to hold our family together – family, friends, doctors, teachers, community, adventures, wine, etc.
If you would like to read more about our family, please check out http://www.caringbridge.org/visit/jacktorrey. That was the first seven years of our journey — THIS is the rest of the story.