July 1999 – It may be hard to see or even comprehend for most, but this is Nicky, 2.5 years old, using a needle to pop his own blood blister on his wrist. I am still on the fence about giving my healthy son a knife to cut his meat, but Nicky has always been incredibly conscientious about using needles or scissors to pop his own blisters. I welcomed it and even liked it because he felt more comfortable doing it himself than having me do it, even as young as 2. Crazy? Not really, not for Nicky. He’s always displayed a maturity in certain things way beyond his age. He’s a little kid for other things too and it’s a nice give and take. Nicky ROCKS! More of Nicky’s life in the book –> http://www.butterflychildamothersjourney.com/ Post Views: 306Read More →

Late last year Nicky started having issues with his G-tube. This is the same g-tube that he has had since March 2000, and we’ve had minor issues since then, but lately it was hurting, more and more, and nothing was helping. After trips to his Doctor and the ER, tube changes etc, it became clear he either needed a new ‘hole” or something was wrong with his stomach. The tube was leaking, it was painful and Nicky could no longer stand to be fed through it. Any meds or food he had to take orally and that was a challenge for him. The only GI that Nicky has ever seen was at Stanford because they are the only Hospital familiar with his condition, so I made arrangements to take Nicky there for emergency surgery for his g-tube. The whole thing was a disaster. The day before the surgery Stanford pre-authRead More →

My son and I had two incredibly hectic days this week. We drove to Stanford one day for 6 hours, and the next day we were in the hospital all day where Nicky had surgery until 5pm, and then we took a 7 hour drive home-longer because of traffic. That trip was so exhausting for the both of us that we are still recuperating 3 days later. I wish I could say I can just rebound from things quickly, but at 54, there is no such thing. Nicky is still in pain from the surgery but he’s doing much better. Nicky humbles me every single day. Just before surgery he realized he had a blister in his throat. He coughed and threw up for 2 hours until he happily told me he popped the blister and he threw up the ‘skin’ of it. Here’s to my son, the hero… heRead More →

Please keep Nicky in your prayers… I am a little frazzled this week but I hope I can explain myself better than my mental state wants to allow. One of the nasty side effects of RDEB is that the scarring does not only appear on the outside of the body, but also in mucosal surfaces, such as the eyes, mouth, throat and esophagus. When Nicky was only a wee bit lad (I am watching too much British/Scottish period drama, I am starting to speak like them!), I noticed that swallowing was particularly difficult. So difficult, in fact that it would take him a few hours to finish a bottle. By the time he was 3 years old, I needed to put a towel over his pillow because overnight he would soak it with his own saliva. Solid foods, or even mushy/baby foods had become an impossibility from the time he threwRead More →

It occurs to me sometimes that when people in general refer to Nicky or any child with EB as “medically fragile”, they may not truly understand what that means. And the truth is that the definition varies widely not only depending by the form of EB but also from patient to patient. Since my only “specialization” is with Nicky himself, I will attempt to clarify what that means to Nicky being called “medically fragile”, which may not be far from describing the experience of other RDEB families. Let’s start with the acronym itself before I go any further to explain why this condition is so rare: RDEB = Recessive Dystrophic Epidermolysis Bullosa. It is called “Recessive” because it’s inherited recessively, meaning both parents are “carriers” of the condition. And even when this is the case, there is only 1 in 4 chances of a baby being born with RDEB, as the babyRead More →

I watch in amazement the Olympics once again this year and I am always blown away. I am not sure if it’s because I’ve never been athletic and anything I see makes me feel fearless or what. I have my own little hero in my house, one that blows me away at every turn. Stuck behind his computer, Nicky can do anything and everything he could never do in real life. Online Gaming and watching videos is part if not his entire life, and in this little world of his, he’s strong, free, he is a warrior, a chef, anything his mind can imagine. This is how he survives. He just doesn’t think about EB. His computer is his opportunity to be someone else, to transform his state of mind and develop optimism and perseverance. He could be bitter, depressed, angry, instead he makes the choice of chasing EB outRead 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 a cure for EB, so I must support those that do and continue my quest in getting this disorder known. The truth of the matter is that with enough money a cure will be found. There are now enough scientists that are trying all sorts of ways to treat EB if not cure it, and every parent of a child with his awful condition wants to be the first to getRead More →