I just noticed that I haven’t posted any ‘wound pics’ of Nicky in a while, so I picked about 4 that I took in the past 2 months.
For those that are unfamiliar with my son’s struggles, he was diagnosed at birth with EB-short for Epidermolysis Bullosa. When he was a mere month old he was further diagnosed via skin biopsy with a rather severe form of this condition called ‘Recessive Dystrophic’ (RDEB), one of the rarest, more severe and more lethal forms.
How rare? How severe? How lethal?
According to the latest statistics, about 3 babies in a million are born with RDEB. Both parents have to be ‘carriers’ (and do not have the condition) and as far as I know there is not ‘test’ to find out if you’re a carrier unless you already have a child with EB.
RDEB is considered severe and eventually lethal mostly because 100% of the patient end up dying sooner or later from complications that range from infections to skin cancer, failure of internal organs and more. Life span is difficult to assess, I’ve met children who, in my view, were a lot more severe than Nicky, yet lived well into their 20s, and others who to me looked great in comparison to Nicky, who did not even reach their 10th birthday. It’s all a crapshoot. It all comes down with keeping on top of infections and cancer, but many times these infections/cancer can sneak up on you with no way to prevent them. Do I hate EB? Let me count the ways.
In the past I would just put photos of my son’s wounds on Facebook, but now I refuse to since all they do is delete them because people are ‘bothered’ by them. Boo hoo. Cry me a river. This is our life, our reality, our struggle with EB. I realize it’s so easy to ignore, look away, most of our relatives haven’t seen Nicky in over a decade. I get such warm and fuzzy feeling about that! No, I don’t. But I do know this has nothing to do with Nicky but more with the uncaring attitude of people in general. No, you can’t ‘catch EB’, come and see him, hug him, love him, and you will see what you’re missing. There is no bigger and more amazing Angel than my treasure. Sad relatives are scared to see him. Their loss.
What makes this all worthwhile is the countless strangers that have come forward and shown us that there are indeed people that CARE and pray for Nicky every day. It means more to me than… I can possibly express. To these kind strangers, who have come forward from every part of the Globe, from India to Norway, from South Africa to Ireland, I THANK YOU <3 <3 <3
This above is a photo I took after I took off the finger bandaging. His index finger was bleeding profusely and it took a while for us to get it to stop. I have to bandage each finger to keep the fingers from webbing and contracting.
His left arm has been a source of concern for MANY years now. There was a point a few years ago that it was completely-and I do mean COMPLETELY- raw, there was no difference between his arm and looking at a package of shredded hamburger meat. It’s been a few years but now we’ve been able to heal it a bit. What concerns me the most is the threat of skin cancer and how he cannot straighten his wrist. Sigh.
I honestly cannot remember his knees being completely healed since he was 5. This is his right knee and it actually looks pretty good here, it looks much worse now, as the wound has spread up quite a bit.
It might be a few months before I get the courage to post more wound pics. There are periods of time where I don’t take any photos at all, it’s hard enough to look at them for a minute before I rebandage it, without them being impressed in my memory forever. But… I know how important it is to document his life with EB, so I will swallow a shot of tequila and take more pics next time.
Thank you for caring enough to look and read.