Parenting a child with a life-threatening condition teaches you that life is precious. Life needs to be lived one day at a time. If I learned to smile despite the yearning to cry, it’s because my new “normal” was to make him smile. I am done being told what to believe, what to be afraid of, who to trust, what to think and who to hate. Why is RDEB medically fragile? Mostly because of the open wounds and the consequencesRead More →

The other night I was changing the bandages of Nicky’s lower back and to my dismay, in the attempt of healing the area, the opposite happened. It’s now worse than it’s ever been. The whole area is a BIG open wound. Ugh. It’s always a shock to me that I can even do this. Before Nicky was born I was an absolute wimp, who could not watch my own blood being drawn. Amazing what we learn to do out ofRead More →

Nicky’s inner strength is something I deeply admire. There are times that he still surprises me with his wit, the way he thinks and the way he handles things. He’s such a loving, deeply interesting boy for those that care enough and are lucky enough to get to know him. He suffers greatly as well though, and that fact can never be ignored. I took the following pictures this past month to give everyone a small glimpse of what his skinRead More →

I cling to the hope that someday in the not so distant future I will know what it means to see my son being free from the daily suffering he endures. In the meantime the only thing I can do is continue to spread awareness. I am not a millionaire nor a scientist. I can’t donate oodles of money for research and I also do not have either the skill nor the expertise to research how to actually find aRead More →

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 isRead More →

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 aRead More →

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.Read More →

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. This was aboutRead More →