RDEB gets worse with age. It really does. Not all forms of EB get worse with age, but Recessive Dystrophic Epidermolysis Bullosa definitely does. I try my best to be upbeat and positive, … to smile… “Nicky’s going to beat this”, yadda yadda, then on some days like yesterday, all I want to is disappear. It was a low I do not wish upon anyone. When your son tells you he wants to “give up” it’s a hard pill to swallow. Today I dust myself off, get up, and try to be positive all over again. My son needs “happy” me. I do try. Nicky overall is hanging in there. He has some worrisome wounds, a throat dilatation that he needs but cannot get due to COVID-19, and the usual daily wound and bandage change routine that drives me up the wall because I have to witness my son cryRead More →

Thanks to the Italian Consulate of Los Angeles Nicky was able to have a day where a Professional Chef gave him a private cooking lesson. The Chef is Michelin Star recipient Luigi Fineo – who is the head chef of N10 Los Angeles, a fine restaurant owned by famed Italian soccer star Alessandro Del Piero. Here’s the video: I want to thank everyone for the kind words, donations and gifts they sent to Nicky via his GOFUNDME and his AMAZON WISH LIST following the airing of the segment. We appreciate it more than you know. I would also like to thank those that responded to my update regarding Nicky’s 23rd Birthday on November 25th and sent him gifts. We will have a big celebration on Thanksgiving Day as we always do. For those seeing Nicky for the first time, a little about his condition. He was born with Recessive DystrophicRead More →

I just realized it’s been a while since I last posted a blog. I am not sure why that is, only that at times my life is not exactly “busier”, just dispassionate about things that I know make me feel better. I do have an excuse, however, I did go to my Uncle Tony’s funeral in Washington DC this past month, which took my mindset to a completely different level – a mindset that took me a couple of weeks to put in its honored place. I loved my uncle. I did. He actually died at the end of last year and was cremated waiting for a spot at Arlington to become available. He was one of those individuals who seemed all rough and tough on the outside but was as soft as a marshmallow inside. He was not someone that was easy to get along with, but all myRead More →

I was worried about Nicky yesterday and I told him so. It seems as if lately he sleeps as much as 18 hours a day! He doesn’t do that every day (his normal is about 12), but he has done this at least 3 times this week-and he told me not to worry. He told me that he spent so much time in the hospital this year he’s enjoying the slumber without interruption in the cool, air conditioned room of his. Awww…. okay. He’s right, of course. Being at the hospital is surprisingly exhausting. The atmosphere is tense, the air is stale, people come and go at all hours and the fluorescent lights don’t help matters. It’s going to take a while for him to recoup and re-energize himself. Still, his wounds on his legs seem worse all of a sudden. His arms are not doing that well either. HeRead More →

I want to share our journey with all of you because it’s been a long road. If we can help at least one person going through something like this, then it is worth it to me to be open about our feelings and struggles. I can’t believe it took 6 months for our life to get back to normal, which explains why my blog became silent. It’s not that I had nothing to say, au contraire! When you spend oodles of times and endless nights in the hospital, you become this zombie that is hard to describe. I did start a diary again and that’s what kept me sane. It all started late last fall. Nicky likes to tell the story that it started back in 2017 when I accidentally ripped his tube out, balloon and all, while helping him go to the bathroom, but the truth is that heRead More →

July 1999 – It may be hard to see or even comprehend for most, but this is Nicky, 2.5 years old, using a needle to pop his own blood blister on his wrist. I am still on the fence about giving my healthy son a knife to cut his meat, but Nicky has always been incredibly conscientious about using needles or scissors to pop his own blisters. I welcomed it and even liked it because he felt more comfortable doing it himself than having me do it, even as young as 2. Crazy? Not really, not for Nicky. He’s always displayed a maturity in certain things way beyond his age. He’s a little kid for other things too and it’s a nice give and take. Nicky ROCKS! More of Nicky’s life in the book –> http://www.butterflychildamothersjourney.com/ Post Views: 856Read More →

Late last year Nicky started having issues with his G-tube. This is the same g-tube that he has had since March 2000, and we’ve had minor issues since then, but lately it was hurting, more and more, and nothing was helping. After trips to his Doctor and the ER, tube changes etc, it became clear he either needed a new ‘hole” or something was wrong with his stomach. The tube was leaking, it was painful and Nicky could no longer stand to be fed through it. Any meds or food he had to take orally and that was a challenge for him. The only GI that Nicky has ever seen was at Stanford because they are the only Hospital familiar with his condition, so I made arrangements to take Nicky there for emergency surgery for his g-tube. The whole thing was a disaster. The day before the surgery Stanford pre-authRead More →