July 2001 – Nicky was 4.5 year old in this picture at Lucile Packard Children’s Hospital @ Stanford. He had had a dilatation which is normally routine for him, but this particular time the Doctors were fearing a perforation, so they had to keep him several days to run test after test. To break the routine I was able to take him for a ride in a little wagon with his toys around the hospital and some volunteers played with him, blowing bubbles etc.
In the end there was no perforation, his esophagus only looked perforated because at one point, in the middle, it split into two chambers, all due to the scarring and baffling experience with RDEB.
More of Nicky’s story in the book… Thank you so much for your support!!
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Love & Light,
