Blog / Nicky's Life · March 3, 2016

Nicky’s Life Part 31

July 2000 – Nicky was 3.5 years old in this adorable photo of him hugging Barney in our home in California City. By then I had already started wrapping his whole body as much as I could for protection. I hadn’t yet started wrapping with padding to prevent his itching, maybe because his itching was not that bad at this point. Most of his wounds were still from mishaps, skin getting traumatized from everyday life. It was only later, closer to his 8th Birthday that his itching would cause most of his wounds and I started wrapping with padding to prevent his itching to cause further damage. Itchy medicine worked “okay”, but since it made him drowsy I could only give it to him at night. This is still the case. Nicky tells me he can pretty much control his itching during the day, but at night he has no idea what he’s doing, so the more itchy medicine I can give him at night, the less damage he can inflict himself. What can I say. This is just a morsel of our life with EB.

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

Love & Light,



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