As I explained quite thoroughly (I hope) in my blog “Dumbing Down EB“, EB varies quite a bit. There are forms that are lethal to babies, forms that get better with age, forms that get worse with age; each form of EB has several subtypes, which can all vary wildly. This is why when other patients with similar forms of EB as my son “question” what he goes through, I get a bit… shall I say… defensive. I think to myself: “Do they think I am lying?” Believe me when I tell you, I never exaggerate, and to be truthful, many times my explanations only tell the tip of the iceberg. I try, really try not to think this way, not to get upset, but alas, there it is. I know things have to change, I must change the way I perceive things and not take things so personally. I am nowRead More →

On my radio show/podcast yesterday I tried… or, rather, attempted, to illustrate the genetics involving EB in a fun way, evoking the dormant (sleeping) recessive gene and wishing it could sleep more often. Alas, genetics are hard to explain. While after nearly 20 years I am on a weekly basis describing the blisters Nicky gets (and pictures do a much better job at that), explaining how he inherited the disorder when the parents do not have the condition it it’s still a challenge. That’s the thing with recessive genes. They are tricky. The most visual way to unravel the baffling of genetics is to find some other way to explain it in ways people can understand. We all inherit a gene from each parent for the same “thing” (eye color, bone structure etc) -the famous “pair” of 23 chromosomes we have in our DNA. One comes from dad, one from mom. Of course bothRead More →

November 2004 – Nicky was 8 years old here, back when I could still give him baths. I did put a little bleach in the water to kill infections, but not a whole lot. At the time the pain level was not as bad, plus his little brother, who was 1 year old at the time, used to be his adorable self and come and play with him and the water and put toys in the water while Nicky soaked. It was a fun time for both. It used to be preferable to soak him before taking off the bandages because it made everything come off very easily. By the time Nicky turned 13 or so, however, the pain level became so unbearable that we stopped the baths altogether and started either soaking a limb at the time or just change the bandages without soaking. His health hasn’t suffered, heRead More →

I talked about my “Concoction” of various healing ingredients that I use to get Nicky’s wounds to heal on my blog here, and with the following video I wanted to show how I apply it on the wounds and info on where I get some of the ingredients and also about a couple of more ingredients I added. The first one is the Aloe Vera Gel I got at GNC (also available at Amazon.com) and the Gentian Violet that I got at RiteAid (also available at Amazon.com). Hope this helps someone! Until there is a cure… Love and Light, Post Views: 514Read More →

July 1997 – Nicky was a little over 7 months old here and the problems with his mouth are already quite evident. Because he could not swallow his own saliva due to the severe problems with his mouth and throat, he would drool endlessly. So much that I would usually put a bib on him. By now he had completely stopped eating solid foods as he could not swallow them well. As a new mother, I thought this was temporary and due to the wounds he had in his mouth. I was unaware of the issues with the throat contracting and constricting. No Doctor had ever mention that to me, and we were still waiting for the approval from the insurance for Stanford (where the EB Doctors were). Only 3 months later Nicky started vomiting blood during a feeding which prompted the first trip to the ER. He never ateRead More →

October 2000 – Nicky was almost 4 years old in this photo. The red, swollen eye was caused by a combination corneal abrasion/wound inside the eyelid. Recessive Dystrophic EB means not only wounds on the outside skin, but also on all mucosal membranes, which include the eyes, mouth, throat and esophagus. These wounds on the eyes are extremely painful and Nicky can go months without getting one of these abrasions, then he can get 3 or 4 in a row, each taking as long as a week to go away. We tried all sorts of things to avoid this from happening. Nicky flatly refuses any gels, creams or anything of sorts in the eye, always has. It’s only recently that he puts eye drops in (he won’t let me do it), which range from burning like hell but working great, to not burning and barely working. He decides how andRead More →

June 2010 – Nicky and his little brother Connor at Camp. Nicky was having one of those “corneal abrasions” we totally despise. As I write this he’s having another one. That’s when he somehow scratches his eye and it’s extremely painful and it takes a few days to heal. When he was little he would spend the first day in the dark, but as he got older he tried to just live through the day, with the help of strong pain meds. His form of EB (Recessive Dystrophic) effects not only his outer skin, but all mucosal membranes, such as his eyes, mouth, throat and esophagus. Sometimes an eyelash gets stuck in the eye and causes the abrasion, other is a slight scratch or when it gets dry after a night’s sleep. Even with all the excruciating open wounds he has, he hates the corneal abrasions the most. It sucksRead More →

A lot of people often ask me how I cope and how I move forward every day. The answer is… if my son can cope and endure, who am I to complain? The backstory of the quote below from my book “Butterfly Child” is an event that stayed with me and I always think about. Nicky was 5 years old, in kindergarten. Walking into the classroom after recess, he tripped on the mat and fell head first into it. The teacher called me in a panic. I flew to my son, and when I saw him my heart sank. Oh. My. God. All the children in his classroom were quiet and speechless, as was his aide. I often wonder what they learned that day. I took Nicky to the bathroom and soothed him, while I gave him some pain meds. I hugged him and told him how much I loved him.Read More →