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 own way. Often times the biggest cause of frustration is people that mean well, but say the wrong things, making us feel worse altogether. Here are my top 5 things you should never say to any parent with a Special Need Child: Give any sort of unsolicited advice, most especially avoid say the words “you should” or “you shouldn’t”. Seriously, NO!!! I beg you, please. Only give advice if it’s specificallyRead More →

I know there are some out there who think they know what the life of an EB mom is like. Maybe you’re an EB (Epidermolysis Bullosa) mom yourself, and this is your truth, but to others, this may be a surprise, or even a revelation. Here’s what my life it’s like from my prospective. You Know You’re An EB mom When…  When you know more than the real doctors do about your child. When you consider internet friends you’ve never met to be some of your best friends. When you think it’s a good day if you don’t see any blood. When you get asked at least once a week if you are a nurse. When your two-year-old knows how to pop blisters. When you pack for a vacation and the first suit case is filled with supplies and equipment. When you have a legitimate pharmacy in your kitchen andRead More →

On my blog at the EB Info World website, I posted the 8 things you can do to Help Bereaved Parents, which is something I wrote for the back of the book I wrote about my son called Losing Alex, available now for the Kindle and paperback. On that note, I had written, also for the EB Info World website, a blog titled ‘Helpful Words for new EB Parents“, but I now wanted to take things a bit further. I often get asked what I need, and it may surprise you to know… it’s not much. All I need most days is to just know people care. Here’s the list I compiled, I hope it helps someone! How to Help Special Need Parents If you have a friend or a relative with a special need child, please remember the following: 1.  Many parents feel distant and isolated from the world,Read More →