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 →

Something happened yesterday that made me realize we have a LONG WAY TO GO before we can say all disabled people are treated like decent human beings, always. Nicky hasn’t been able to walk since he was 15 years old and damaged his feet beyond repair. With RDEB, when an area gets wounded too often, once it does heal (if it does heal), it remains incredibly weak. At this point Nicky can “transfer” from bed to wheelchair, or from wheelchairRead More →

Yet, here we are. And I still have some dwindling hope against all odds, because it’s hard to hope when your child pushes against a very strong current. My hopes and dreams I have for my child die a little more each day as I watch him struggle to just survive. I surprise myself at the kind of person I’ve become. I literally explode when people treat my son with any degree of disrespect because he does not deserve it.Read More →

I was watching “The View” this morning and it got me real upset. Megan McCain, who has no children, let alone sick children, can spew out her superior “Pro-Life” views (It’s “Murder”” she screams, over and over again), but what begs the question is WHY her party consistently and persistently doesn’t care about children when they get out of the womb, you know, those that are already here and suffering. I’ve made no secret of the fact that I’ve hadRead More →

What I am watching When season 1 of 13 Reasons Why dropped on Netflix last year I wasn’t interested in watching it at all. Let’s face it, it has been a LONG time since I was in High School, and little by little, year after year, movies or shows that depict teenagers’ lives are less and less relevant nor interesting to me. Then on a talk show one of the actors that portrays a parent of these kids started explainingRead More →

Two years ago Nicky started a clinical trial at Stanford with a cream called “Zorblisa” that helped his wounds heal quite a bit. This is not a cure, of course, but getting wounds not only healed but healed WELL is always paramount to ensure optimal health. No wounds = no infections and no cancer, which are the deadly complications of RDEB.  For us, preventing wounds to begin with became a quest. While we cannot claim this as a miracle cream orRead More →

This is also an Italian-American dish. Which means, if you go to Italy, you will not find it. I first had this soup at Olive Garden and I loved it so much I searched high and low for a recipe, and I tweaked this enough to make it as close to the original as possible. Sometimes if I am pressed for time or feel lazy I do this in my Instant Pot and it comes pretty good too! Enjoy! —————————————————————-Read More →

When Emanuelle McIntosh  asked me to be the first of Inspirational stories to share on her YouTube channel I couldn’t say YES fast enough. Nicky was on board even before I asked him if it was OK that I said yes! Nicky and I are of one mind, and when we’re not he’s sure to tell me, LOL. My husband sometimes makes fun of us, as I know what Nicky needs before he even says what he needs. He’s a partRead More →