As parents, we always want to encourage our children to be able to stand up for themselves. Anytime I feel I may not be doing a good job at this considering how much I advocate for my Nicky, all I have to do is look at my healthy son, now 14 years old. He ROCKS! He’s totally willing and able to stand up for himself. He often asks me how to deal with so-and-so and comes home from school telling me how he successfully dealt with whatever situation he was confronted with. Nicky however, is a different story. Raising a child with a rare disease is profoundly confusing and complicated. With something like Epidermolysis Bullosa, we are forced to learn all about wound management, take crash courses in everything that has to do with their skin, and learn how to advocate for medical care, among becoming an insurance expert. MostRead More →

I pride myself in being even-keeled. Very little truly upsets me anymore. Looking at the bright side? That’s me. I let a LOT of things go. Ask my husband! He is often more upset about stuff than I am, even when the problem is mine. I tell him to chillax. My issue though is that sometimes I refuse to let things or people upset me for so long that when the proverbial drop makes the glass overflow, I tend to act abruptly over a seemingly little thing. Then again, sometimes, they are not little things at all. In the past I have had friends that treated me with such disrespect and I let it slide for so long that when I abruptly ended our relationship they seemed stunned. I hate losing friends, but sometimes my mental health is more important.  When anyone upsets or disrespected my children however, I haveRead More →

For many years to come we survived on donated bandages or, worse, washed and re-used bandages. It’s heartbreaking for everyone to see my son not only suffering but deteriorating before our very eyes.  The death of my child changed me in ways I cannot ever explain nor express the monumental importance of. When you hear a bereaved mom mention the name of their child in heaven, just listen. I will continue to fight, just as all parents on this journey do. We will fight on all levels, with all the love we can muster, because our children deserve our best. Sometimes I wonder if my tiredness is not strictly physical but mental as well. Can anyone feel tired because their mind is? Post Views: 2,172Read More →

Society as a whole is filled with nice people. I met a ton of these kind people, whose heart is filled with kindness and generosity. But I don’t live in a bubble. I know some people are cruel. I know there is hate in this world. I know there is racism, bigotry, prejudice, misogyny, homophobia and discrimination. And while I encountered this cruelty in my life before my children were born-and stillborn, I just didn’t know how real it was until I became a special-needs mom. I am a little weary taking Nicky anywhere with me-a simple trip to Target can be filled with long stares, ugly looks and whispers. It’s unconscionable, but that’s how it is. This is why I am so very thankful for the people that are kind to us, we really need it. No, special need parents didn’t ask for this. Neither did we. Like most inRead More →

January 2008 – Nicky showing his flexibility! This is one of the few things he can do with his body. He may not be able to walk or move much, so it’s always fun for me to see this fun/crazy side of him. In this picture Nicky was 12 and he hasn’t really changed much at all, he truly looks the same!!! That smile and the ability to not think about his condition and concentrate on doing what he can do is something I truly admire about him. He does not dwell or despair on the ugliness of his EB. He loves his routine and does what he can do instead. I don’t know if there will ever be a cure for him, although that’s what I hope everyday, but if he’s happy on a daily basis and he’s able to smile and laugh, as a mom, I know IRead More →

Nicky was born on November 25th, 1996 and was diagnosed with Recessive Dystrophic Epidermolysis Bullosa (RDEB). EB is a rare genetic skin disorder, his body does not produce a vital protein that glues the layers of his skin together, hence the slightest friction causes painful blisters and wounds. His body has to be covered with special wound products and bandages to allow his wounds to heal and protect his skin from further damage. There is no treatment or cure at this time. You can help Nicky and all the children like him by helping us raise awareness! Like and share this image today. Follow these links for more information:Debra of AmericaEB Medical Research FoundationEB Research Partnership Thank you!!! Post Views: 2,558Read More →

This was an important week for Epidermolysis Bullosa Awareness. An article about a boy in Germany that was treated with skin grafts from Dr. De Luca in Italy is making the rounds around the world. (Here’s the link for the CNN article). The original research article that was published on Wednesday (the link is here) explains how it was all done. It’s complicated stuff, but here’s a quote from the CNN article that explains how it works: To obtain the skin’s stem cells, the doctors took a small biopsy — only accounting for 1½ square inches — from an unaffected part of the boy’s skin. The stem cells were processed by De Luca in Italy. A healthy version of the gene that is normally defective in epidermolysis bullosa patients was added to the cells, along with retroviral vectors: virus particles that assist the gene transfer. Needless to say I receivedRead More →

Life hands us raw deals, and we can either laugh or cry, and while I am not sitting here telling you I’ve never cried, nowadays I try my best to enjoy life, enjoy the little things, enjoy the moment, take it all in. I don’t intend to host a pity party by sharing my pain and struggles — by sharing, I think I help open minds to what Epidermolysis Bullosa looks like.  The problem with the scarred areas is that they are very fragile. There is a big difference in how much pressure I can put on areas of his skin that have never been wounded and chronic ones. Those that have either Recessive Dystrophic EB or Junctional Herlitz EB bear the unimaginable cross of knowing that not only they have to constantly suffer, but eventually the condition will take their life, many times sooner rather than later. I’ve read manyRead More →

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 child could breathe and eat on his own, it’s not like he was on life support. What was she supposed to do? Starve him to death? Not change his bandages and hope for an infection to take him or… go get a gun? Ugh. How insensitive could these people be? Plenty. As I’ve learned over the years. It’s so easy to discard a life, a human being, when it’s not yourRead More →