Several years ago I happened upon a reply to a post about a child with severe RDEB in a special need parenting forum and one of the commenters stated that they should just “kill him”. That comment got a lot of likes and it got me very, VERY, VERY upset. I was irate. I could not sleep for days. That same week another EB mom had to defend herself from similar commentaries. On her blog she stated that her childRead More →

It was a cold, rainy, foggy day when we left San Francisco this past February at the end of the shoot for Nicky’s documentary. We arrived home just before midnight, exhausted but happy. Nicky then slept for over 12 hours, as he often does. I was contacted by Barcroft TV Productions last fall after Kate, a producer, came across my book “Butterfly Child” where I wrote about Nicky’s life with Epidermolysis Bullosa. She wanted to know if Nicky might beRead 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 →

“This message is so simple, yet it gets forgotten. The people living with the condition are the experts.” I was reading an interview with Michael J. Fox on a magazine and when I read that line I had to underline it a million times. Not only because it’s true, but because it reminds me that asking my son how he feels or what his pain level is on a daily basis is so crucial. Nicky is a pretty brave individual,Read More →

Women are a swirl of emotions as it is and my husband often tells me how on earth we live longer knowing how conflicted we are inside all the time. We are. We are emotional bags and this sort of experience is like a tornado of emotions. Forget tornado, how about a category 5 hurricane? Genetics are hard to explain. Trying to make people understand how my son inherited the disorder when his parents do not have the condition isRead More →

Today is the international day of Rare Diseases – of course Epidermolysis Bullosa being one of them, it hits close to home. There are about 7,000 rare diseases, affecting 30 million Americans, 300 million people worldwide, but only 5% have treatments, and far fewer have cures. Rare diseases often go undiagnosed, and while a diagnosis per se does not cure the condition, the fear of the unknown is greater. Even when you do get a diagnose, sometimes it’s hard anywaysRead More →

As Nicky’s 20th Birthday came and went, I am reminded of so many moments in his life where things were dicey. When I really thought he wasn’t going to make it to his 8th birthday, let alone reach his twenties. When he was 5 years old, in fact, he took a bad fall, which denuded both his legs of skin from his knee to the ankle. His knees and ankles were already non-healing areas by then. After 2 years ofRead More →

Last night, during a bandage change, I barely touched Nicky’s feet and he yelled in pain. I wasn’t touching a wound, mind you, I was simply “gently” feeling his skin. His feet nowadays are mostly healed, and they have been healed for sometime, they really look beautiful all in all, so I was a little perturbed. In truth, for the past several months – or years – Nicky won’t let me touch his feet at all. If there is aRead More →