Blog · November 22, 2019

Nicky Makes The News :-)

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 Dystrophic Epidermolysis Bullosa (RDEB for short), which is a recessive condition. They don’t test for it during pregnancy because it’s too rare. It never showed up in my family before, nor his dad’s as far as we know. 
The only way a baby is born with RDEB is if BOTH parents are carriers, and even so, there is only a 25% chance of showing up. It’s a roll of the dice each pregnancy. Furthermore, the subform that Nicky has (Generalized Severe, who used to be called Hallopeau Siemens) is so rare that there are only a little over 100 cases nationwide.

What the reporter said about the bankruptcies is unfortunately true. Because the condition is so rare, insurance companies have often refused to pay for bandages, and I often wondered how anyone with a sick child can somehow afford to pay $20-35 co-pays for therapy/Doctor appointments several times a week. On top of the daily challenges of having a child in pain every day, the financial ones are a “thank you for kicking me while I’m down” situation. Frustrating doesn’t even cover it. The whole story is in my book Butterfly Child (buying my book is another way you can help me cover medical costs. Thank you!)

I adore my son. I simply worship him. Despite my love for him, and despite my best efforts, I cannot take away his condition. I desperately wish that I could, but I can’t. And as capable as I think I am, I know that I am powerless over EB itself and equally powerless to take away any of his considerable pain. It’s our reality. And in my better moments, I accept our world as it is, not as I wish it would be. I’ve come to appreciate realistic expectations. Reality can be tough companion at times, but it’s an honest friend.

The movie Life is Beautiful has taught me that even the most grim reality can be transformed thought the power of a positive perspective. That’s what I try to do and that’s how I’ve talked to Nicky since he was born.

Thank you for all your love and help.
Love & Light,