throat dilatation

June 24, 2020

Nicky Updates, June 2020

It’s been a while since I updated everyone on Nicky’s health. So, here I go. Because of the COVID-19 all kinds of appointments were cancelled, but Nicky does have an iron/blood infusion in early July and an esophageal dilatation on August 24th, so he does have some stuff happening soon....

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January 26, 2017

Frazzled

Please keep Nicky in your prayers… I am a little frazzled this week but I hope I can explain myself better than my mental state wants to allow. One of the nasty side effects of RDEB is that the scarring does not only appear on the outside of the body, but...

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