“Butterfly Talk” on YouTube

I am slowly adding all the episodes of “Butterfly Talk” on YouTube as time allows for your listening and viewing pleasure. Butterfly Talk is a monthly radio show/podcast I run myself. The episodes not only are available on the Blog Talk Radio website but also on iTunes. Putting them on YouTube expands the audience, the more awareness the better! This was the first “official” episode with my good friend Lorraine Montello as my first guest. Her son Garrett has RDEB and is 18 years old. She also started a business with her son called “Montello Fine Foods“. Happy Listening!! Love & Light, Post Views: 20

Confession of an EB mom

This morning I hated being an EB mom. “Hated” is such a mild word to describe it too. Nicky woke up in a lot of pain. He tried to pull something off of him, ripping skin off and causing a wound that was already bad to increase in size and bleed profusely. As he was crying in pain I had to change all the bandages on his bottom and upper thighs which were green, apply healing ointments, cover and wrap as much as I could. Thank God I had morphine to give him. He is sitting peacefully playing his game now, and I can’t get over it. I am still shaking. I then came across an article fromRead More

Side Effects of RDEB

If there was one question that I was asked more than any other in regards to my son’s condition is why he and others with RDEB look so pale and why they don’t seem to age per se, they always look very young. Even when Nicky was interviewed by FOX11 earlier last year, the most pressing question that came to me from the reporter and later by some of the followers of Nicky’s page is why Nicky looked so young. “He does not look 18 at all, why is that?” There are many answers. For one, most RDEB patients have some sort of iron deficiency. This is because iron is lost from the extensive deep wounds and serious bleedingRead More

Nicky’s Life Part 14

September 2003 – Nicky wasn’t quite 7 years old when his little brother Connor was born. Nicky would spend a lot of time just staring at him in awe! He was so happy when he was born that at the hospital he told me he was so happy he now had “a little brother to love”. These two are best pals till this day and I know they will be pals forever. More of Nicky’s story in the book… Thank you so much for your support!! http://www.butterflychildamothersjourney.com/?page_id=19 Love & Light,   Post Views: 16

The Present Is All There Is

Last night Nicky started crying in my arms. “I can’t do anything mamma, what am I going to do after I get my diploma?”. He has only 4 credits left and school is so hard for him, he is not interested in going to College. He told me he would go to culinary school if he’s ever “cured” or if his life will be made simpler by him being able to walk and use his hands normally, which right now is impossible. I reassured him we would “figure it out”, but as a mom, I’m dealing with a bag of emotions that are hard to describe. Someone recently was talking to me about the future for Nicky inRead More

It’s Just Depressing…

If there is something that is prevalent in our society, is the saying to those that suffer: “Hang in there, things will get better”, which is fine and dandy if it’s said to someone whose condition will, indeed, get better. When you have a child with a “terminal” condition, however, (Nicky has the Recessive Dystrophic form of Epidermolysis Bullosa-Hallopeau Siemens subtype) a child that gets worse and worse all the time, when I hear that somewhat canned statement, while on one hand I appreciate the kind thought, on the other hand it reminds me of the undeniable truth. Yes, I can “hang in there”, sure, but things will not get better. Ever. The only thing I get toRead More

Epidermolysis Bullosa Needs a Cure NOW!

A few weeks ago I read a comment from someone stating how great the advancements for a cure for EB were coming along and how they were happy to wait. I just bowed my head. Just in the past couple of years so many children with EB, similar to Nicky and many even younger than him, have passed away, that this comment of being “fine with waiting” and “we’ll get there eventually” just upset me. I am sorry, call me crazy, but my child has been “waiting” and suffering for almost a couple of decades now. RDEB (Recessive Dystrophic EB) is degenerative, meaning it gets worse with age. At this point Nicky is stable, but things could changeRead More

Nicky’s Life Part 9

This is part 9 of an infinite series of photos I am posting on the Facebook page I have for the book I wrote about my journey raising my son with RDEB (Recessive Dystrophic Epidermolysis Bullosa) called Butterfly Child. I am posting a few images from Nicky’s life and commenting on either what was going on at the time or explaining things about the picture per se. This “picture commentary” will serve as a companion for anyone that is kind enough to purchase and read my book as my appreciation and thanks. November 2000 – This photo was taken a week before his 4th birthday. This was right after a bandage change. I took a little break before wrapping his hands, Nicky wasRead More

I Can Disagree

I know this is not a popular stance, or maybe it is, but if living with a child (he may be 18 now, but he’s still my child and will always be-and he will always live with me!) with a rare form of Epidermolysis Bullosa has taught me, is that no matter how much a Doctor cares, sometimes he or she can be wrong. I read a book a few years ago about a local mother whose teenage daughter was diagnosed with a rare form of Brain Cancer, which is almost always incurable and impossible to detect before it becomes deadly. The Doctor did everything he could to treat her and by some miracle it looked as if theRead More

New Giveaway for My Book “Butterfly Child”

My new giveaway for my book “Butterfly Child” is now live! Enter for a chance to one 1 of 2 Autographed copies! Autographed by both Nicky and I nonetheless!! Here’s the link! –> https://www.goodreads.com/giveaway/show/150684-butterfly-child Thank you so much for your support… and if you have already a copy, please consider leaving a review! Much love <3 Post Views: 16

Updated Wound Pics :-(

As I posted yesterday, wound pics generate a barrage of negative comments on Facebook, they usually end up being reported and deleted, which is why I don’t post them there anymore. It’s just not worth getting banned over them when I can just post them here. This is EB-more specifically, Recessive Dystrophic Epidermolysis Bullosa-Severe Generalized subtype. This is what my son has. I know very well how upsetting these photos are. They upset me greatly. However, what other way is there to fully explain the condition? I haven’t found another one that is this eloquent. There are no real need for words. I have some photos of his arms that are even more disturbing to me than these,Read More

Every Life is a Gift

I came across a reddit page yesterday that deeply disgusted and disturbed me. The title of the post was this: “If I found out my child had that (EB), I would kill them in their sleep.” This is sadly not the first time (and it won’t be my last) where I encountered ignorant comments from people that are just, well, ignorant. As if the lives of children with EB have no value, are unimportant, have no purpose and no place. As if living with EB is simply a burden to erase without a single thought. I call them ignorant because this is not THEIR child, THEIR flesh and blood they are talking about. Would they really kill their own child inRead More

Every EB child is different

I was touching Nicky’s new skin on his foot the other night while changing bandages, and while it looked great and normal, just touching it I could tell that a tiny little movement across his skin with my finger would tear it right off. The other foot was plagued with blood blisters just from attempting to “transfer” from the power chair to the car seat. With a lump in my throat I wondered out loud why. Why does he have to be THIS fragile. So, imagine getting a copy of a letter one Doctor sent to another Doctor discussing Nicky’s “walking” goals. Ugh. Let me share here what they wrote verbatim… “We again emphasized with the mom thatRead More

Narration about my book “Butterfly Child”

Just before my 30th birthday I found out I was pregnant with my first baby. All my friends were already mothers and I had wanted a baby for so long that this pregnancy ended up being something surreal. I walked on air for the entire 9 months, it truly was Unicorns and Rainbows all the way. I was so happy. Then, the unthinkable happened. The day he was due, February 26th, 1995, I could not feel him move at all, not even when I ate something cold as he normally did, all my tricks to make him move failed and I was worried. The thought that he had died never entered my mind, however. The next morning, aRead More

Nicky’s Life Part 6

This is part 6 of an infinite series of photos I am posting on the Facebook page I have for the book I wrote about my journey raising my son with RDEB (Recessive Dystrophic Epidermolysis Bullosa) called Butterfly Child. I am posting a few images from Nicky’s life and commenting on either what was going on at the time or explaining things about the picture per se. This “picture commentary” will serve as a companion for anyone that is kind enough to purchase and read my book as my appreciation and thanks. April 2000 – Nicky is 3.5 years old here. Wrapping the hands had become second nature. While it didn’t 100% stop the webbing and contracting of the hands (mostly becauseRead More

When I Can’t Explain, I Show.

It has become apparent over the years that 9 times out of 10, when Nicky tells me his foot is really “bad”, I need to brace myself. This is what I braced myself for a couple of weeks ago… After I took off the bandages, big areas of skin just started peeling off the top of the foot. I wanted to show this picture because I wanted to illustrate how fragile Nicky’s skin is… it does not even blister anymore in some areas, it just peels off like this. If he has a crust anywhere it will actually “cause” more blisters and create bloody areas too. The crusts dig in the good skin and create more damage. AsRead More

Nicky’s Life Part 5

This is part 5 of an infinite series of photos I am posting on the Facebook page I have for the book I wrote about my journey raising a child with RDEB called Butterfly Child. I am posting a few images from Nicky’s life and commenting on either what was going on at the time or explaining things about the picture per se. This “picture commentary” will serve as a companion for anyone that is kind enough to purchase and read my book as my appreciation and thanks. Summer 1999 – Nicky was 2.5 years old here. This is about the time I started taking photos of Nicky’s blisters, and I only did that so I could accurately explain what wasRead More

EB Still Surprises Me.

One would think that after 18+ years, nothing about EB would surprise me anymore. Well, it does. EB still manages to shock us at what it can do and how it manifests itself. Last night as I was taking off a bandage from Nicky’s upper left arm, it looked as if an infection (pus) was setting in a wound-but not in the usual way. Normally the pus (I know, yuk, but EB can be just majorly yucky) fills up a blister, or it colonizes a wound, but this time it was different. It looked like it managed to infiltrate itself way under the skin somewhere, so the pus had to be “squeezed out” of this little hole. WTF?Read More

Nicky’s Life Part 1

On the Facebook page I have for the book I wrote about my journey raising a child with RDEB called Butterfly Child, I started posting a few images from Nicky’s first years and commenting on either what was going on at the time or explaining things about the picture per se. As time moves on I will move on as Nicky ages. This “picture commentary” will serve as a companion for anyone that is kind enough to purchase and read my book as my appreciation and thanks. This is the first one I posted in late April and this is what I wrote below: August 1997 – Nicky was 9 months old in this picture. It was soRead More

EB Sucks

I updated my Caringbridge Blog today (here’s the link–> http://www.caringbridge.org/visit/nickyz/journal/view/id/554ba814f02065dc3614f506) and I also posted a photo on my Butterfly Child Book Facebook Page and I talk about the pain and suffering that Nicky endures. It’s not easy. EB sucks. It’s been two years now since I had to start giving Nicky pain meds basically 24/7 and to me it’s a shock he didn’t need them all day before. He always needed them for bandage changes, but never at any other time. I always asked him what was his pain threshold, and as I write in the book, sometimes I am convinced his body is reacting differently about pain than a regular person, simply because his body is so usedRead More

Onions & Potatoes

Apparently the past 18 years I had my head completely in the sand. The cure for EB was in my cupboard! Who knew? Instead of putting fancy creams, or high tech bandaging and wound healing products, I should have just covered Nicky’s wounds with potato skins and cooked onions and mushed them up good enough to go into his g-tube and… woop, bye-bye EB. If only it was so simple. I am not sure why, over the years, explaining EB has been such a struggle. I know everyone means well, but… think about it for a moment. Really think. Would you tell someone with, say, Down Syndrome, to eat a certain thing to make their diagnosis go away?Read More

This is RDEB

I don’t take any perverse pleasure posting this picture, but I learned long ago that RDEB (Recessive Dystrophic Epidermolysis Bullosa) cannot be explained, it can only be shown. And even while posting this photo I cannot show how easily the skin peeled off, or how hard it was to re-wrap, as the upper thigh is extremely hard to bandage because the bandages themselves shift and move endlessly. I am not posting this to evoke sympathy or pity. I am posting it to open a door into our lives to help others understand, to educate and build acceptance for children and adults living with this condition. Follow Nicky and his journey, living with RDEB here–> https://www.facebook.com/NickyLivingWithEB Los Angeles News |Read More