Being the parent of a child with Epidermolysis Bullosa or any illness/condition is a perilous journey. The rarity of the condition makes it so we have to take any advice we receive from Doctors, Nurses and even other EB parents with a grain of salt. There are many forms of EB and each form has many subforms, so what works for one patient may not work for another. We are all dealing with something foreign and devastating in our ownRead More →

Is that time of the year again… the time filled with Christmas songs and glittery trees. It’s a time to be hopeful, to enjoy, to be more open and loving. I asked my mom the other day if she put the Christmas tree up yet… she said the time for the Tree or the “Presepio” in her house is over. Boo. If I was in Italy I would put it up for her as I did when I was aRead More →

It’s often a full time job caring for a child who is medically fragile. We are not only parents; we become nurses, therapists, chauffeurs, companions and more. For some of us, the needs of our child are so time consuming that working outside of the home becomes impossible and impractical. Thankfully, certain cities, counties or/and states realize this and help. Many children with disabilities receive support, and as their parents it is our responsibility to fill out the mountains ofRead More →

Planning a year from now, a month from now or a week from now isn’t always an option. I make and break plans constantly because my child’s health can turn on a dime. We spend our days changing bandages, fiddling with medications, with needle pokes, blood draws & infusions and we measure milestones with wound healing and high red cell counts. One would think that after 20 years and 2 bankruptcies I would be used to this hellhole of aRead More →

I remember vividly being pregnant with my first baby, Alex. Finally my dream of becoming a mom was coming true. I waited an elated 9 months for his arrival, and on the day after he was due we found out he had died in utero. He was stillborn 2 days later. Seven months after that unthinkable loss I miscarried a baby girl at 8 weeks. Thirteen months after that I finally held Nicky. He was a bundle of warmth that feltRead More →

What I am watching I truly love the saga of Ross Poldark, now in its 4th season on PBS (Masterpiece). Aiden Turner in the lead role is quite the eye candy to boot! The show takes the story from a series of 12 books written by Winston Graham. Set in Cornwall, England, at the end of the 18th century, this show has it all. Romance, Betrayal, Jealousy, Wars, Intrigue, Politics… and the center of it all is our dashing hero.Read 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, butRead More →

WHAT IS EPIDERMOLYSIS BULLOSA? Epidermolysis Bullosa is an umbrella term for inherited, genetic skin blistering conditions that vary greatly from mild to lethal. The three main forms are categorized under “simplex”, “junctional” and “dystrophic”. In recent years they also added a “kindler” form and an “autoimmune” form to the list. By “inherited” it means that some forms are dominantly inherited (the parent has it, and their child has a 50/50 chance of getting it) or the parents are “carriers”, whichRead More →