By:
On:
In: Blog
Tagged: , , ,

As EB Awareness week is approaching, I always hear the “numbers” of EB being floated around. One official website states the incidence of EB  is 1 out of every 20,000 births. Another official website states One in about 17,000 live births. Yet another official website states 1 in 50,000. The truth is, most likely nobody knows for “sure”. I am telling you this because I remember quite clearly a gal that was a waitress at an EB event who then went to the organizer to tell her afterwards that she thought she had EB, how her feet always blistered and nobody knew why. She later found out she indeed had EB. This happens because the genetics of EB are so unique and vary so much from patient to patient that the diagnose, especially in the more light forms, can be almost impossible to achieve unless you know what to look for. The simplexRead More →

By:
On:
In: Blog
Tagged: , , ,

If there was one thing I’ve been criticized endlessly for, and for which I’ve stood my ground over and over again, is my need to bandage Nicky. I wrote extensively about it in my book (Butterfly Child), but I feel the need to make my feelings more “public”, so to speak, because, once again, I was attacked for it, merciless. I am not sure why people I do not know, who very obviously (having met them or seen their pics) are dealing with a different subtype or subform of EB feel the need to go to the extent of calling me a “bad”, “horrific” or a “crazy mother” and why they feel the need to “tell me what to do”, as if, after 19 years of inspecting every inch of Nicky’s skin and trying all sorts of things to improve things, apparently I must be an idiot in their view. When I tellRead More →

By:
On:
In: Blog
Tagged: , , , , ,

For the past few years now I’ve been mixings things up to put on Nicky’s wounds and I do believe I have a good mixture of ingredients now that has helped his wounds in ways no other single item has before. It all got started a couple of years ago when a friend suggested “Medihoney“. Since another EB mom I love had great success with honey for healing wounds, I was eager to try it. But it was too sticky. It was a disaster, Nicky hated it. I stopped using it while I was trying different things, always meaning to find a way to use it. Another acquaintance then had me try cannabis mixed with coconut oil and I saw some improvement, but the consistency was a disaster. This oil was running everywhere, it was hard to apply. I then tried to mix the cannabis with healing creams instead andRead More →

By:
On:
In: Blog
Tagged: , , , ,

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 bleeding that occurs, and loss of iron has the side effect of making the skin pale. Normally after Nicky gest an iron infusion he gets rosy cheeks, so I can always tell howRead More →

By:
On:
In: Blog, Nicky's Life
Tagged: , ,

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: 554Read More →

By:
On:
In: Blog
Tagged: , ,

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 in the aspect of medical care after he’s 21 and… I don’t even know how to respond, so I don’t. The future… yes. I can’t go there. Sorry. Aside the fact that I’veRead More →

By:
On:
In: Blog
Tagged: , ,

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 to look forward to is watching my son get worse and worse. I can’t even think beyond that. I already buried a son, my mind is prohibiting me to go “there” for self-preservation.Read More →

By:
On:
In: Blog
Tagged: , , ,

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, but I want to take some new photos of those in a couple of months then I will post them. The truth is that I don’t like posting photos too often. EBRead More →

By:
On:
In: Blog, Nicky's Life
Tagged: , , , ,

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 because of all the scarring that happened BEFORE I started wrapping the fingers), it did slow it down considerably. I was talking to Nicky last night about wrapping the hands and he toldRead More →