Blog / Nicky's Life · May 12, 2016

Nicky’s Life Part 39


My sweetie pie! I just want to pick him up and cover him with kisses. Here he was about 6 months old in the late Spring 1997 and taking a nap surrounded by pillows. I will forever regret not bandaging his hands back then, I just did not know they would web and contract. No “real” internet back then and no Doctor knowledgeable enough to tell me otherwise.

Nicky is one of those perhaps rarer cases of RDEB where his fingers were already contracting when he was 9 months old. By then his index finger was already a permanent “hook”. What causes the webbing and contracting is the scar tissue that builds up due to the wounds healing without moisture. In RDEB the skin that regrows that is air dried (at least in Nicky’s case, I can’t really pretend to speak for anyone else) has almost complete loss of elasticity, they call it syndactyly. At any rate, this new skin has no idea what to do, it bonds with other similar skin and webs and keeps the fingers trapped in.

I knew nothing of this when Nicky was little. If I had, I would have wrapped his fingers to prevent wounds and prevent this nasty new skin to form instead of the supple soft skin that ought to regrow. No amount of “touching and feeling” pleasure when he was little can make up for the loss of his hands as a teenager and as an adult. Having said that, we have wrapped his fingers after the surgeries religiously and the amount of usage he has kept on those fingers because of the wrapping is nothing short of remarkable.

After a decade from the first hand surgery 3 of the fingers on one hand were still really good thanks to the wrapping. We all know after a decade of not wrapping, Nicky would have a fist instead of a hand, heck, he would have had a fist after 3 months! Anyway. I just wish I knew then what I know now, but I did what I could with the knowledge I had, and I certainly have no regrets about that!

At least, as I recount in the book, Nicky is thankful for his hands and I appreciate the fact he cherishes his hands and is grateful for my efforts in keeping his fingers.

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

Love & Light,



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