August 1997 – Nicky here is 8.5 months old and with my help he can stand up. At this point his feet were not too bad so he could put some weight on it. Plus, he was not that heavy! This is key and one of the reasons why nowadays it’s painful for him to stand, he’s just too heavy. He’s an adult now.

Notice I am holding his arms and not his poor little hands. I cringe when I see the awful state of his hands. This is one of the horrible things that RDEB (Recessive Dystrophic EB) is responsible for, the scarring and mittening of the hands. We would end up doing his first hand surgery a year later and we started wrapping it ever since. I wish I could/would have done it right away, but I did not know hands could web. Nobody told me and the information was not “out there”. The internet back then was not what it is today.

More of Nicky’s story in the book… Thank you so much for your support!!
http://www.butterflychildamothersjourney.com/?page_id=19

Love & Light,

Animation337_silvia

 

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