A recent visit to the ER for my son Nicky powerfully reminded me how much power we have, as parents of children with rare diseases, to control the situation. To control how we are treated. To make sure we are listened to. We are, after all, the experts on our kids! Nicky may be 21, but he’s still MY kid. Speaking up for my son, especially  if something doesn’t sit or seem right is now a way of life. No oneRead More →

If there was one thing I’d want everyone to know it’s to please be aware that parents of special kids, especially those with lethal conditions, are hurting. Badly. So, when you see a parent pushing a child in a wheelchair at the grocery store or at Target, send them a smile, a kind word, anything. You will make their day. I will continue to research methods, oils, trails and anything else, as I must because Nicky needs me to beRead More →

It’s that time of year where depression sets in. The time where “vacations” are over and it’s back to the old grind. Of course, the fact that Nicky is having the corneal abrasion from HELL doesn’t help at all. It’s the constant battles, every time you turn around, that exhaust me. I had someone ask me why Nicky “wakes up” with corneal abrasions since we sleep with our eyes closed. I know this is a valid question so I wantedRead More →

What I am watching I am a huge Trekkie as my friends know. I used to go to Star Trek conventions back in the early 90s! I am also, shall we say, an equal opportunity Trekkie. I like all Trek shows, movies, all the time, unlike my sweet hubby who is only a big fan of the original show. He’s watched the movies with me and a few of the Borg episodes of the Next Generation, but that’s about it.Read More →

Going to the Debra.org PCC is always a treat. The first Conference I attended with Nicky was the one held in Los Angeles in 1999. It seems like forever ago. Nicky was 2.5 years old and by then I had many “online” friends which I had the absolute pleasure to meet in person. Back then, without Facebook or even MySpace, the only way to find someone who was dealing with the same rare disorder was through mailing lists or messageRead More →

As Italian as you can get, this was a dish my mom made all the time!!! I wish I could say you could use “any” rice to make this, but Arborio is the rice you should use for this dish. Thankfully you can now find this type of rice anywhere nowadays. Enjoy! —————————————————————- Ingredients: 2 tbsp butter 1/3 cup chopped onions 2 tsp minced garlic 4 cups chicken broth 1 cup arborio rice 1/4 cup grated Parmesan cheese 2 mediumRead More →

My son Nicky was diagnosed with Epidermolysis Bullosa (EB) 12 hours after his birth, a month later we received the official diagnosis of “Recessive Dystrophic”. Here are my top 6 things to know about Epidermolysis Bullosa. 1. Epidermolysis Bullosa is a genetic skin disorder. Epidermolysis Bullosa it’s an umbrella term for a group of genetic skin blistering disorders. The condition arises from genetic mutations present at birth, which can be inherited either recessively or dominantly. Different mutations cause the differentRead More →

February 2002 – The famous rainbow cupcake at SeaWorld (Florida)!! From the book: “Before we left the park that evening we had to grant Nicky one last request: earlier in the day he had seen this “rainbow” cupcake and bugged us about it, but at the time we could not wait in line otherwise we would have missed Shamu, so on our way out we stopped and got him the cupcake! He was thrilled.” More in the book –> http://www.butterflychildamothersjourney.comRead More →