I was worried about Nicky yesterday and I told him so. It seems as if lately he sleeps as much as 18 hours a day! He doesn’t do that every day (his normal is about 12), but he has done this at least 3 times this week-and he told me not to worry. He told me that he spent so much time in the hospital this year he’s enjoying the slumber without interruption in the cool, air conditioned room of his. Awww…. okay. He’s right, of course. Being at the hospital is surprisingly exhausting. The atmosphere is tense, the air is stale, people come and go at all hours and the fluorescent lights don’t help matters. It’s going to take a while for him to recoup and re-energize himself. Still, his wounds on his legs seem worse all of a sudden. His arms are not doing that well either. HeRead More →

Ever since Nicky has started having trouble with the g-tube we had to change our whole routine. While some are small things, the biggest change has been how much weaker he’s become, so, instead of him coming to the couch to change bandages, I go to him. He spends his day at the computer chair, so I grab the bandages and I sit next to him while I change the arm, leg, or whatever. He’s weak because he’s lost so much weight, but also because moving is painful. He’s been moving less and less over the years. When you don’t want to move much, it affects your joints and your muscles. The fact that his feet are mega-sensitive and he can’t really walk on them doesn’t help any. When he does walk he walks (with the help of his walker) on his tippy-toes, which are extremely well padded. An “outRead More →

This was an important week for Epidermolysis Bullosa Awareness. An article about a boy in Germany that was treated with skin grafts from Dr. De Luca in Italy is making the rounds around the world. (Here’s the link for the CNN article). The original research article that was published on Wednesday (the link is here) explains how it was all done. It’s complicated stuff, but here’s a quote from the CNN article that explains how it works: To obtain the skin’s stem cells, the doctors took a small biopsy — only accounting for 1½ square inches — from an unaffected part of the boy’s skin. The stem cells were processed by De Luca in Italy. A healthy version of the gene that is normally defective in epidermolysis bullosa patients was added to the cells, along with retroviral vectors: virus particles that assist the gene transfer. Needless to say I receivedRead More →

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 change on a dime. We are still holding out hope because there are so many people researching a cure at this time, but Nicky does not have TIME. He can’t wait much longer.Read More →

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? When you’re dealing with a genetic condition, no matter what you do, the problem remains. Yes, different products help in the “healing” of the wounds, but the cause of the blisters, theRead More →

I wanted to take a moment to thank everyone that left very sweet comments on my Caringbridge post (dated November 2013). The guestbook does not give me an option to reply, so, to all that did leave me sweet messages, thank you. In time of need I know I have friends that really care and that means a lot to me, so, THANK YOU! OK, since yesterday afternoon there are GOOD news and BAD news. I will start with the bad. 🙁 This is a photo I took of Nicky last night. He was *very* upset. We ran out of his ‘itchy medicine’ a few days ago and the Doctor is taking their sweet time to fax the refill to the pharmacy, so now he’s scratching himself to death. What you see here is his left leg’s enormous blister in the middle of the leg hanging that pretty much wentRead More →

Imagine… for a moment, being so thrilled about finally having that baby you longed for so long. This is 21 months after the unimaginable happened, when you had to bury your first baby, being told, in a little room in a hospital, that your second newborn would most likely not reach his first birthday. Imagine being told that there is no cure, no treatment, all you have to do is instantly be transformed into a nurse, insurance not paying for the expensive bandages needed to care for this child, and all you can do is wait for the inevitable to happen with no hope. That was me on November 26th, 1996, the day after my son Nicky was born. Those words still echo in my psyche: ‘No cure, no treatment’. As a matter of fact, there was nothing happening anywhere in the world to even attempt at curing EB atRead More →