Expedition Awareness
Dalton Royale
“We reached the room, sat down and he simply stated, “There is a lesion on his brain.”  He went on to say some other things but I didn’t hear them.”
Why Do this

Dalton is an energetic, intelligent, creative, and my one and only child.  He is what gets me out of bed in the morning and the reason for breathing.  I think all parents feel that way about their children but I thought I should specify nonetheless.  He is five years old (Six as of April 1st).  He loves playing with his step-brother, Cole, who is the same age.  They are practically inseparable and can often be spotted out wearing their Power Ranger, Batman, Ironman, Transformer and other costumes.  It doesn’t matter what time of year it is, they love wearing them.  Dalton was referred to as "the kid in the Batman suit" at local supermarkets.  When he isn’t with me, I’ve been asked where Batman is.  He doesn’t know a stranger and is very outgoing and friendly except when he and his brother are arguing.  He loves his little blue stuffed animal, Lucy, and is still having a hard time not sucking on his thumb.  He loves any type of video game: Batman, Spiderman and Transformer movies.  He loves to swim, exercise with mommy and wrestle with his brother and Bill, his step-dad. A McDonald’s cheeseburger makes his eyes twinkle and Crab Rangoon gives whole new meaning to the word ecstatic.  He loves to have books read to him and for me to snuggle with him until he falls asleep at night.  He likes to help clean up the kitchen, fold laundry, and vacuum; but not cleaning his room.  He is very sensitive if he thinks anyone is upset with him and seems like he is always trying to prove himself.  I can’t reassure him enough that he is perfect in my eyes and has nothing to prove.  

What Happened -

In January 2008, Dalton was diagnosed with Adrenoleukodystrophy (ALD).  We were immediately asked if we wanted to join a study at Johns Hopkins Hospital that used a special oil called Lorenzo’s Oil along in conjunction with a low fat diet to stop the disease from progressing.  We went there every year thereafter.  Every month in-between we would have to take him to get his blood drawn and have it sent to Baltimore for testing.  All in all it was very doable and I was very confident that my son’s disease would not progress.  On March 11, 2010, we were in Maryland for his yearly visit.  The day before was the same as the years prior.  His numbers looked great and his body was responding well to the oil.  The morning of the 11th, the doctor walked us down to the MRI room which seemed to be miles away.  I joked around with Dalton putting his mind at ease about going in the “brain machine.”  It took a little coercing but eventually he relaxed for the MRI.  We finished the MRI in 20 minutes or so and walked back up to the room.  I asked the doctor (as I had in the past) how the MRI looked.  The times before this March visit, the doctor would respond with something like, “He looks great!”  This time he responded with “Let’s discuss it when we get back to the room.”  I cannot recall how many times I said the serenity prayer in my head but I’m sure it had to be more than 20.  We reached the room, sat down and he simply stated, “There is a lesion on his brain.”  He went on to say some other things but I didn’t hear them.  Was this really happening?  A bone marrow transplant is necessary.  We would need to find a donor and get to Minnesota where we were referred to.  In the blink of an eye, my son’s disease went from “doable” to “How can I do this to him?” 


Dalton’s Story

To Follow Dalton’s Progress

- Kathryn
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