Almost there…

The first time I saw my little Nicky

The first time I saw my little Nicky

As of yesterday, my book Butterfly Child is officially done. I cried a thousand tears writing this memoir, which encompasses the past 20 years of my life. As of right now I am doing a final re-read, going through every page with a fine tooth-comb, making sure the grammar is top notch. I want to make sure it’s perfect. I am hopeful I can be done and I can make it available by mid-February.

I’ve thought long and hard how to market/publish this book, and if anyone has any info, suggestions or advice, please do pass it along. I am open to anything. Worse comes to worse there is always Lulu… it has served me well in the past.

Thank you everyone for your support, and please like the page below… it would mean the world to me. I will post more excerpts from the book and misc stuff. I will keep everyone posted on its release as well.

 

Love and Light,

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Ask Nicky Video!

A big thank you to those that sent their questions to Nicky! Here’s the video as promised.

Connor said he feels left out, so please submit more questions for Nicky and some for Connor too for another video coming soon!

Thank you so much for your kindness and for caring about Nicky. Let’s kick EB’s butt!

Much Love,

ww_silvia

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Encounters

smile_quoteA few years ago I had a brief encounter with a little girl that I am still thinking about. I was at Children Hospital Los Angeles with my boys; Nicky had an appointment with the endocrinologist (I think?) and on our way out a couple was behind us with this little sweetheart in a big stroller. She had a flower on her hair and a frilly dress on, but what gave us pause was her face. Despite having some sort of excess bone growth condition, which made her head 2-3 times bigger than normal, she sported the sweetest smile on her face. I told the boys to smile and wave back, which they did, and it wasn’t until we were in the elevator that they asked me all sorts of questions. They wanted to know what she had. I of course had no idea. I looked it up online but came back empty handed. It might possibly be Craniodiaphyseal dysplasia but I am not sure.

Of course the diagnosis means little, aside from satisfying my sons’ curiosity, what I wished I could have done instead is spending a few minutes with that mom. I know only too well what it’s like to be stared up and down and judged, and I wanted to extend the kindness offered to me on occasion of someone stopping and not only asking, but really wanting to listen, to know how she was doing, and to tell me more about the condition her daughter had. I know how healing it is to be able to talk to someone who sincerely cares.

I know from experience it means the world to me when strangers stop and ask. Just last week when I took Nicky to Stanford we stopped and had dinner at Olive Garden and one woman on her way out stopped just by Nicky and said… “Oh my gosh, I have to ask you what happened!” She was so funny the way she said it, Nicky and I had a chuckle. She looked at me and I told Nicky to take it away. He still looks like he’s 12 so everyone always looks to me to answer questions they may have, but I do want for Nicky to become more assertive. Take it away he did! He told her he had a skin condition and she relayed to him that several years prior she had been in a car accident where 50% of her body had been burned so she lived in bandages for many months. Nicky told her that we were in ‘town’ for the clinical trials and she truly acted concerned and happy for him. She wished us well and off she went.

Of course my favorite kind of encounter is the one where someone asks me if Nicky has EB. It happened 3 times in 18 years. In two of those times the women that asked had a cousin with EB, and one just knew about EB because she had just seen something on TV about it the day before! Imagine my shock over that! Truly a “Let me pick my jaw off the floor moment”!!!

Like Nicky says, if you see someone that looks different, just smile. Imagine the ugly stares that little girl gets all the time. I get chills just thinking about it. Sadly, I’ve gotten to the point where I ignore looking at people’s faces when I am out with Nicky. I hate being that way, but I do it to protect myself. I somehow built a shield because those ugly stares are so hurtful and are hard to digest. I know Nicky does the same. We do what we must to survive and be happy.

Now a little update on my various projects. I will start the ‘Ask Nicky‘ videos this week, so if you have any questions for him, please leave me a message here. I am excited for everyone to hear him talk. This kid blows my socks off and I need to share his little wisdoms and prospectives, ha ha.
As per my book Butterfly Child… yes, it’s almost done. I am THIS CLOSE! My goal is to have it done by the end of January. Please don’t shoot me if it takes a whee bit longer than that. I promise is coming!!

Thank you so much for your support and love you send my way. I appreciate it more than you know.

Love and Light,

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Ian Ziering Playing for the EBMRF on Celebrity Apprentice

ian-ziering-768Ian Ziering has my full cheering section support in my house as he plays to raise money for the EBMRF on the Celebrity Apprentice, premiering tonight on NBC. The EBMRF stands for “Epidermolysis Bullosa Medical Research Foundation” (website here: http://www.ebkids.org).

The EBMRF and their fundraising efforts are behind the research for a cure that have been going on at Stanford for as long as my son has been alive, and of which clinical trials have started which Nicky will be participating in. If there is hope for Nicky, it is because of the EBMRF. I have no doubt about it.

The amazing thing about this foundation is that from its establishment, it pays no salaries. All work, including executive, development and administrative, is done on a volunteer basis. It is the goal of the Foundation to keep operating costs at less than 1% of incoming donations so that a full 99% of contributions can go directly to research programs.

I ran across this video of Ian Ziering talking Epidermolysis Bullosa and at the end of the interview I teared up. To have a celebrity say that he feels like he’s a winner just because he was able to mention EB in an interview means more to me than words can say.

God Speed-let’s get EB cured and let’s end the suffering!!!

Love and Light,

ww_silvia

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The Importance of EB Awareness

eu4ppA quick post today-I made this graphic for my ebinfoworld.com website and Facebook page as part of a bunch of Memes I did one day earlier this month and this particular one is probably the best one I’ve made, which explains fully why Awareness for Epidermolysis Bullosa is so important.

I remember vividly one day over 10 years ago (probably more like 12 or 13) driving to Children Hospital Los Angeles to see a particular Doctor/Dermatologist for Nicky who, I was told, was at least ‘familiar’ with EB. Nicky had some issues, I forgot what, and I made it a point that day to drive 90 minutes to see this particular Doctor.

However, on our way we encountered traffic. BAD traffic. It was so bad in fact that our 90 minute drive turned into a 3.5 hour nightmare. So, now, instead of being early for our appointment, we arrived massively late, so late in fact that the Doctor had left for the day! It was a rainy, miserable day, I did not know what to do. The receptionist talked to a few people and told me I could be seen by Doctor so-and-so. I needed prescriptions for things, I couldn’t just ‘leave’. It took me 3.5 hours to get here darn it, I was going to get something for all my troubles!
They put is into a room and lo and behold, this very young Doctor and 3 interns came in. This was not unusual-you see, EB patients are like unicorns, rarely seen out there, and I’ve always been eager to teach everyone about my son’s condition, so I obliged to them taking notes and ask questions. Over the course of the hour, I did 99% of the talking. Nobody knew what EB even was, I had to explain and teach this Doctor and the interns everything. They gave me whatever prescription I wanted, and thank God for that, but imagine my amusement when the receptionist then asked me for the $35 co-pay. As I handed over my debit card I told her how ironic that I was paying for teaching people about EB now. Egads!

That is the reality of those with rare diseases. We can never take the word of any Doctor as final, because no Doctor can be a true expert on EB, and we know that even with EB, everyone is so different, mainly because the genetic mutation can vary so greatly from one patient to another, that what works for one will not work for another and viceversa. I am yet to find another patient with the SAME genetic mutation as Nicky. Imagine that!

I came across this video that aired last year on the TV show “The Doctors”, and what John goes through is very similar of what Nicky’s life is like-or I guess, was like at his age. Of course Nicky is older, so now he’s a lot less mobile than he was years ago, which saddens me to no end. However, is thanks to show like these and patients like John, who are willing to put their lives and their skin ‘out there’ that we can attempt to make this condition more known, so that not only Doctors can help the families better, but also that more funds can be donated for research. My personal preference is the EBMRF.

I hope everyone had a Merry Christmas and many wishes for a Happy New Year! Let’s hope 2015 brings much awareness and much healing for all those with EB!

Love and Light,

SilviaNewYearsdollie-vi

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Infections Beware!

On our first trip to Stanford, back in August 1997, Dr. McGuire told us something that would forever be etched in my mind. He told us that the #1 enemy and the #1 reason for the demise for children with RDEB was infections. To say he scared me to death in one sentence it’s the understatement of the year. Not only he confirmed his RDEB diagnosis, but also mentioned the word ‘death’ and ‘infections’ in it. Fantastic.

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September 1999 – Nicky here was not quite 3 years old. I wrapped his arms and chest to prevent any injuries and this blister appeared in the only area I did not cover. As you can tell, these are monster blisters, if I didn’t wrap his body, he would have been like that everywhere…

This was about 17.5 years ago, at a time where the only information I could get about RDEB was from books, and they were vague. Children with RDEB were (and still are!) rare, and any Doctor I saw back then treated Nicky as if he was the long lost Unicorn, rumored to exist, but nobody had actually seen it. But Stanford was seeing them, just one day per month at that, and these Doctors knew what they were talking about. RDEB was a death sentence, that much was true, but on the same day we got to meet a young man whose RDEB went away during puberty. As I shook the hand of this now-healthy 19 year old man, who still had the scars to prove his diagnosis, I knew I had to have hope. Hope was gone and came back in one single day.

Even so, it seemed as if the only answer I got from them about getting rid of infections was ‘antibiotics’. It took me years to figure out to get rid of infections without using antibiotics, and while I am not exactly one to pat oneself in the back, I know I must be doing something right if we are sitting here, these many years later, and Nicky never had a serious infection, and in the past decade he’s been on oral antibiotics a handful of times. IV antibiotics never.

Antibiotics scared me to death. If overused they stop working, so I knew I had to find alternative methods to treat the infections. When Nicky was a baby our only recourse was to cover the wounds with vaseline gauze and put rolled gauze over them. That’s how the nurse showed us to do it. Right away though, I felt this method didn’t work quite well. Everything was getting stuck to the wound. We tried Telfa pads, but they only macerated the wound, almost inviting the infection in for a visit. I made do for a while this way, but no Doctor nor nurses had any tips on other products to use. Nicky was on topical and oral antibiotics often.

Then when Nicky was 2 years old he had a reconstructive hand surgery on his right hand. To put things into prospective, the hand was so stiff he would not even use it. He was only 2 years old!! I know many RDEB patients’ hands don’t start webbing or contracting or becoming stiff until much later, but this was our reality. We knew nothing about bandaging the hand, and even when we found out, insurance didn’t cover the cost of bandages and we couldn’t afford them. The hand surgeon, a gung-ho of a man I will never forget, introduced me to Xeroform and told me the amazing benefits of anti-microbial products in fighting infections. This gauze is particularly useful as a dressing because it is non-adherent, meaning it won’t stick to wounds, and it has antiseptic and antibacterial qualities that help keep wounds from becoming infected. He also told me that his body would not build a resistance to it like it could for antibiotics. From that moment on, any wound that looked even slightly infected I would cover with Xeroform and it would heal perfectly thereafter. Even one time when Nicky was 3 or 4 and Dr. McGuire swabbed the wound on his foot which proved to be infected, by the time I got the prescription for it once I got back home, the wound had healed thanks to the Xeroform. We also now use the silver products, which have similar agents, and I also spray Tea Tree Oil (it destroys bacteria) on them before applying them to the wound. I also love many other products, so I make my own concoction of Desitin or any 40% zinc cream (which helps the wound heal faster), Argan Oil (promotes healing), ulcer healing cream and Medihoney (also promotes healing).

Infections beware! I am on the job and you’re toast.

Perhaps it is because the condition is so rare that nobody could give me straight answers, but I want to encourage other parents never to take the word of a Doctor as final, you can disagree and you can make your own decisions and do your own research. Nicky of course, could not be his own advocate, I had to be that person for him to do the leg work and I gladly did it.

Of course par for the course was to make sure Nicky didn’t get the wounds to begin with, hence my wrapping techniques changed and evolved over the years. As he has gotten older, now Nicky has wounds that do not want to heal at all, but they are and we keep them infection free for the most part using these products and padding for protection. We all do what we must. Don’t let anyone tell you you’re doing it wrong. You know yourself and your child best. I often say I know my son’s skin better than I know my own, and I mean it!!!

Trust your guts!

Namaste~!

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The Best Holiday Gift You Can Give Me!

LosingAlexCover4sFrom one crazy overwhelmed mommy to another, I need your help!

The best holiday gift you can give me, in anticipation of my release of the book Butterfly Child – A Mother’s Journey (due out in early 2015) is a review of my book “Losing Alex”, which is a FREE download for the Kindle TODAY AND TOMORROW on Amazon :-) THANK YOU SO MUCH and HAPPY HOLIDAYS!!!

If you don’t have a Kindle, it’s OK, Free apps for your devices and even your computer available here–> https://www.amazon.com/gp/digital/fiona/kcp-landing-page?ie=UTF8&ref_=kcp_mac_mkt_lnd

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