Blog / Nicky Updates · August 16, 2019

Where is the cure?

I was worried about Nicky yesterday and I told him so. It seems as if lately he sleeps as much as 18 hours a day! He doesn’t do that every day (his normal is about 12), but he has done this at least 3 times this week-and he told me not to worry. He told me that he spent so much time in the hospital this year he’s enjoying the slumber without interruption in the cool, air conditioned room of his. Awww…. okay.
He’s right, of course. Being at the hospital is surprisingly exhausting. The atmosphere is tense, the air is stale, people come and go at all hours and the fluorescent lights don’t help matters. It’s going to take a while for him to recoup and re-energize himself.

Still, his wounds on his legs seem worse all of a sudden. His arms are not doing that well either. He has wounds from elbow to wrist that haven’t been fully healed in a very long time. In the past the left arm has looked like raw meat and even had excess flesh growing, it was a total eyesore and very painful as one can imagine. 

Our motto has been and is always “no wounds” and that’s why I over-pad areas prone to itching to make sure his skin can heal or does not get injured in the first place. Wounds for Nicky can be a big detriment to his health. I was told when he was born that the #1 killer for RDEB patients was infections and for older patients skin cancer (Squamous Cell Carcinoma mostly), and the less wound mass, the less of a chance of developing either.

He still can’t really walk anymore, not sure if that will ever change at this point since his feet seem to be super-sensitive and super-fragile compared to the rest of his skin while it’s healed, but we’ll move forward as always, one day at a time. 

I hate to see Nicky suffer so much and the question always remains. Where is that darn cure?
The hardest words I’ve ever heard spoken were: ”There is no cure”. What kept self pity from seeping into my soul was my faith in the ability of those looking for a cure, but Nicky is now 22, and will 23 later this year. Where is it?
Sometimes I wonder if the cure for EB, or at least for the rarest (and most lethal) forms (RDEB/Junctional) just aren’t forthcoming or have just slowed down to the point of crawling because of the simple reason of money. Yes, there is money being poured in for a cure, and I understand this is tricky stuff, but the opposite is also true. There aren’t enough customers, enough profit to be made by a cure, while EB patients keep bandage supply companies alive. That’s what keeps me up at night. What keeps me crying, what steals my hope. Sometimes I wonder when a celebrity is going to have a child with EB. Not that I wish a sick child to a celebrity, but since these babies are born all the time, might as well be to someone that could make a HUGE difference, right?

I will always want a cure for my son. I was put down and ridiculed for this many times. I was told to “accept” instead. The thing is, I have accepted, but I still want a cure. These two things are not mutually exclusive.

I’ll be honest, the future terrifies me. Nicky can barely move nowadays, he’s simply getting worse and worse all the time. I thought he was close to the end earlier this year and then he miraculously pulled through. To date, Nicky’s journey includes dozens of operations (including throat dilatations and g-tube placements), multiple hand surgeries (Five I believe), treatment by more than thirty physicians from multiple specialties in a dozen hospitals, half a dozen insurance companies and medical costs out of this world. It’s enough to make a person go insane.

Despite it all, Nicky amazes me every day. His attitude about all of this blows my mind. Yes, he LOVES his pain meds, yes, he *HATES* EB, yes, there are times he wants it all gone so he could live a normal life, at the same time for the most part he takes it all in stride. He’s a very loving, caring person that tells me he loves me a dozen times a day, who hasn’t cursed in I don’t know how long, who is more sweet than sugar, who is content very easily, and takes life one day at a time.

I Heart Nicky! He needs a cure. Now.

Love & Light,