Blog · June 11, 2014

It Takes A Village

So much to tell with the amazing pouring of support due to the story on Nicky that aired on the local FOX11 and more….

Before I get started… four links:
1. Nicky’s original story that aired on FOX11 in late April…

2. Nicky’s follow-up story on FOX11 that aired in mid-May of Nicky’s living his dream of being a pastry chef

3. Nicky’s page on Facebook where I post updates on him, run by our friend Jodi Champagne.

4. Link to get the book ‘Courage Under Wraps’, a photographic documentary by Jodi Champagne of Nicky’s life with EB (print and ebook).
Itunes version available here:

IMG_3270f_skI can’t start this blog without sincerely and wholeheartedly thank my beautiful friend Jodi Champagne for without her, none of this would have ever happened. For years and years… and years, we were alone. Let’s face it, a rare disorder is lonely. Nobody understands how lonely it is unless they are going through it. I really didn’t have any close friends nearby anymore, and our families were not close. My ex-husband’s family (Nicky’s dad’s family) is in New Mexico and they haven’t seen Nicky in 14 years. My husband’s family is in Florida & Texas. Having moved as a teenager to the US, I left my family in Italy, my entire, loving family which cried on many occasions that they would help me if only I was closer. They have done so much being on the other side of the globe… amazing. I never felt good about leaving people that loved me unconditionally and my whole life I felt conflicted about it. Conflicted because while on one hand I knew I was *supposed* to be here, on the other hand missing my family was sometimes almost unbearable. But I was lucky, we could call, write letters, and later with the advent of the internet, emails became norm. Now with Facebook, Skype and social media, we are closer than ever. A century ago when people used to immigrate, they completely lost contact with their families. I can’t help but being in awe at their strength and sense of desperation that led them to do it. To me, it was not desperation that led to my move, it was my feelings of adventure and the deep down feeling I was a traveler in this life and my destiny was here. I can’t really explain it any other way. Once Nicky was born, I sometime even regretted leaving.

The bottom line is that I needed a Village to help me take care of this child, and I was alone. How alone? I am putting everything down in black and white…writing down my story in the book I am working on ‘Butterfly Child-A Mother’s Journey‘. I am hoping to be done by the end of the summer, by the end of the year at the latest and then shop for a publisher.

When the book ‘Courage Under Wraps’ was released, we were a little disappointed that it didn’t grab as much attention as we had hoped. Maybe our expectations were too high, but I honestly felt Jodi’s photos were amazing and I knew there was ‘something there’ and the right person had to see it with connections to spread the word.

Enter FOX11 reporter Gina Silva. I tweeted her one day in early April, during one of my many twitter campaigns for EB I do every once in a while, in the hope to raise awareness and to my glee, she answered my call. She was in awe of the book, of Nicky, and came to our house for an interview. It was after the story aired that the ‘Fired Up Chief’ started a fundraiser for Nicky-I didn’t even know about it at first, I only found out after he had already raised over $1,000. I’ve always been such an advocate for the EBMRF that if anyone talked ‘fundraiser’ I never thought of us, even though we had 2 bankruptcies due to medical bills and other bills that wouldn’t have been there had I been able to work or the insurance covered some of the expenses or co-pays hadn’t drowned us financially.

This time though, it was different. I knew we needed help. I was no longer in the denial mode that would lead us to another bankruptcy. Nicky needed a new power chair, one I could break down easily and that was light so I could do it myself. The insurance could only get one for us that was heavy and when we got it, after I pleaded that I needed something ‘light’ I was heartbroken. I could barely use the thing. We also had some bills that needed to be paid off before we could even ‘think’ of getting a new car. My husband, who had 2 strokes 4 years ago, is still driving my 17 year old green monster to work, after our 10 year old truck broke down and needed $2,500 in repair we didn’t have. I was always afraid he was going to breakdown on his 40 minute drive to work. We are upside down on our mortgage, which there is nothing anyone can do, but our 12 year old TV in the living room had lost the ‘red’ of it. That’s the TV we watched when we did Nicky’s bandages so it was just bizarre. It couldn’t be fixed as it was no longer made. We needed a new one and had no money to get it. The only reason I have a nice car to drive is because Nicky’s dad is a gem of a man, and while we sucked as a couple, he’s an unbelievable generous dad and person. Not only he bought me the car, he gets Nicky anything he needs. Just in the past year he got him a new TV, the WiiU and A/C for his bedroom.

IMG_3220_skSo, when I described to Juan our needs, he upped his fundraiser goal to $5,000, and Nexus, the company that Nicky’s dad works for, had their own little fundraiser in Malibu for Nicky as well.
Just to get this ‘boost’ to our finances, meant a new power chair for Nicky, bills paid off, a new TV for the living/bandage room and Nicky’s dad is helping us getting our old cars sold and get a new one. To say I can breathe… OMG… I can’t really describe it. I can breathe!!!!! I can breathe!!!!

In our ‘Not my problem’, ‘Everyman for himself’ society there are still those who believe it takes a village, who help people. Not because they are friends or family, but because they are human. I always knew it took a Village to raise this child, and I honestly feel now I have one. THANK YOU!

And it doesn’t end there. The Butterfly Fund had started a Facebook page where they post all the wish lists of EB kids (and other sick kids) and they urged me to get one going for Nicky. Once it was posted the pouring of love just blew my mind. I have things in there that we need on an on-going basis, supplies, accessories for his new chair and other things (such as the Mario dolls!) to decor his bedroom etc. Jodi and her husband and one of their friends, Dan, had helped me redecorate/paint his bedroom and these additional items helped us giving a finishing touch to an already adorable room. Nicky may be 17, but he loves his Mario stuff!!!

A huge thank you to everyone that helped Nicky and helped our family! I am humbled beyond words. Nicky is so happy with his new chair… he said he just ‘loves it’. It’s lighter, faster, and even more comfortable. He loves his ‘Mario’ stuff just as much as he loves when I join in and play Mario Kart with him. We’ve been playing Mario Kart together since he was 4.

Love, Light & Blessings!