“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 →

July 2013 – Nicky, 16.5 years old, on the deck of our cruise ship as it was approaching Dawes Glacier. Following is an excerpt from the Book “Butterfly Child”. In early 2012 a woman from the Scott Ward-Schofield Memorial Fund contacted me. This Charity was formed to raise awareness for Epidermolysis Bullosa and arrange and pay for holidays, short breaks and special days out for sufferers and their families/carers. I was happy to help this woman spread the word aboutRead More →

Yesterday morning I had a Doctor appointment and as I was sitting in the waiting area I struck up a conversation with an older gentleman looking lonely. I normally don’t struck up conversations with strangers very easily, but he looked friendly with his fluffy white mustache, and I love senior citizens as a whole, so we started talking about the desert being in bloom and gardening. When I started telling him about my 86 year old dad and his garden inRead 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 →

I grew up in Italy, so this whole thing about needing “Medical Insurance” is still a bit baffling to me, even though I’ve lived here 2/3 of my life. The more I learn about Health Care in Italy the more I like it. I can’t help but compare what Insurance Companies put me through, forcing me to declare bankruptcy twice over medical bills they refused to pay, with similar circumstances from friends and family in the old continent. My cousin’sRead More →

I remember clearly this girl on the right. I was painfully shy. Painfully. So painfully so that in third grade, when asked a question about geography, I didn’t speak because I was afraid to be wrong. I wasn’t wrong, I had studied all day before, but when I was asked this question in front of the class, I froze. My shyness got me an F. I was mostly a quiet child not only because of my shyness, but also because IRead More →

December 1998 – Nicky, 2 years old, showing off his straight ‘new’ hand after surgery. Following is an excerpt from the Book “Butterfly Child”. The hand itself, thanks to my hellish efforts did heal up straight, but for a while there I thought it wouldn’t. As wonderful and caring the hand surgeon was, he just could not comprehend my paranoia in making sure the hand healed straight. The problems with the scar tissue that covered Nicky’s hand before the surgeryRead More →