We are Phil and Amy May. We have been married 26 years and we have 4 children. Jackson is 21, Conner is 18, Dylan is in heaven (and would be 15 in earthly years) and Sophie is 12. We had 3 wonderful boys, as of October 4, 2004, when our world came crashing down. That day, Dylan was diagnosed with Krabbe Disease, at 8 ½ months old. Our first inkling that something might be wrong was when Dylan did not sit up at 7 months. His checkup at 6 months had been perfectly normal. We took him to his Pediatrician, who shared our concern and started some testing. We were sent to the Genetics Clinic at Monroe Carell Children’s Hospital at Vanderbilt. We began to notice more alarming things. The doctors used the word “regression”, and we had no idea how serious it was to lose skills. Dylan could no longer suck his thumb, which had given him such comfort. After several weeks of excruciating waiting and eliminating various treatable illnesses, we were given the diagnosis of Krabbe Disease. We were handed a printout describing the horrible decline, debilitation and ultimate death that our precious little boy would face. We were told to contact Dr. Kurtzberg at Duke to determine if Dylan was a candidate for a stem cell transplant. That single suggestion was the total advice we were given. From there, we started to “recreate the wheel”, as each Krabbe family before us must have done. That is why we are part of the LCN. Our desire is for every child with the devastating diagnosis of Leukodystrophy to be given the best possible care.
We were told that the average life expectance for Krabbe children is 13 months, but “death is certain by age 2.” Our Dylan lived until 10 days before his 5th birthday. We actually had to cancel the birthday party we had scheduled at Build-A-Bear. He lived 4 years, 3 months and 2 days after his diagnosis. We felt completely misguided about his life expectancy, but were grateful for each and every day. We never dreamed we would have so long with Dylan (but yet such a short time), so the decisions we made did not necessarily reflect a life expectancy of 5 years. That is why we are so passionate about the LCN. Children with leukodystrophies and their families deserve the best – the best care – the best research – the best information – the best life – the best love.
We want to honor our son Dylan’s life. Our lives revolved around Dylan for his short time on earth. We made a conscious decision to LIVE our lives WITH Dylan for as long as we could, when it seemed the medical community had just sent him home to die. We wanted him to enjoy as much of his life as possible. And now we want to REMEMBER HIM WELL by being involved with the LCN. The LCN is here to help families access proactive and comprehensive care for their child, not to individually “recreate the wheel” as families had to do in the past.
Before we go on, we must mention how we survived Dylan’s illness, eventual death, and the pain afterward: ONE DAY AT A TIME, WITH OUR LORD AND SAVIOUR JESUS CHRIST.
If not for Christ, and our firm knowledge that Dylan would be and is now with Him, we would not have made it to today. We would not have our marriage, our family intact, our sanity, or our relative emotional well-being. We know beyond a shadow of a doubt that Dylan is with Jesus, and fully restored to health, with no crying and no pain. We are confident that Dylan is “Dancing with the Angels, Walking in New Life”, as the song says by Monk & Neagle. We will end with a quote from the Mercy Me song entitled “Homesick”: “In Christ, there are no goodbyes. And in Christ there is no end. So I hold on to Jesus, with all that I have, to see you again. To see you again”. Dylan, we will see you again, sweet boy.