We are Phil and Amy May. We have been married 23 years and live in Tennessee. We have 4 children. Jackson is 18, Conner is 15, Dylan is in heaven (and would be 12 in earthly years) and Sophie is 9. We had 3 wonderful boys, as of October 4, 2004, when our world came crashing down. That day, Dylan was diagnosed with Krabbe Disease. He was 8 ½ months old (the family photo below was taken shortly after Dylan’s diagnosis). 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 Vanderbilt Genetics Clinic. We began to notice more things, such as Dylan not sucking his thumb anymore (because he couldn’t). 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 here.
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. He lived 4 years, 3 months and 2 days after his diagnosis. We felt completely misguided about the life expectancy, but were grateful for each and every day. You need to know this, because each child is different. There is no “normal” with Krabbe disease. 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.
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. So if we can help you and your family members to NOT have to “recreate the wheel” in researching the care for your child, then we have honored our son.
Before we go on, we must mention how we survived Dylan’s illness, eventual death, and the loneliness 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. You will find very little mention of our witness to Christ in this website until the last page (Witness), where you can also find the route to peace and comfort in salvation through Jesus Christ. We are completely assured 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.
With Faith, Hope and Love,
Mommy and Daddy