Blog / Nicky's Life · January 29, 2017

Nicky’s Life Part 51

June 2001 – Nicky, 4.5 years old @ Stanford just before his dilatation.

Following is an excerpt from the Book ‘Butterfly Child’ Chapter 9

“One of the things that turned out to be very frustrating about the move was finding a new Pediatrician. After much research I took Nicky to the first appointment and let’s just say this woman was a complete disappointment. Not only she was quizzing me on the minutiae of his care, which made me feel defensive and guilty at the same time, but also she knew absolutely zero about EB – not a surprise there – so why is she telling me I “overwrap” my child? How would she know? She also refused to refer Nicky to Stanford to see the EB Doctor for him to get the dilatation he needed.
I felt so disrespected that day, not only as a parent, but also as an expert on my child’s condition. I ate so much anger that day that I resorted to call the DebRA Nurse asking for her help. I never had to do that before. The Doctor then relayed to me that the denial was not her fault, how the Medical Group would never approve such referral. The DebRA Nurse convinced her to try anyway and unsurprisingly, the referral was denied.

Nameless administrators determined what was best for Nicky without ever meeting him or knowing what EB was. I think their decision would have been different if they could have just looked into my son’s eyes and hear him ask, “When will I feel better again?” When will the Insurance Industry ever learn to work in partnership with Doctors? I hope I am still standing when that day comes.
The reality was staring at me smack in the face. Nicky needed a dilatation, he was up almost every night throwing up and my apartment was filled with towels, sheets and blankets filled with vomit. I spent all day every day doing laundry; I didn’t want anyone coming over because my small apartment was just icky. I felt so horrible for him, the absolute least I could do is make phone call after phone call to get these people to understand what Nicky needed. I don’t even remember how it all worked out, but somehow, someway I got the referral and we scheduled the dilatation for late June 2001. Even so, this woman upset me so much I decided to get a new pediatrician. I found this nice man in Tehachapi that took Nicky’s case. He wasn’t the greatest or anything, but I know he did try. I took Nicky to him up until we moved to Lancaster over a year later.”

More of Nicky’s story in the book… Thank you so much for your support!!

Love & Light,



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