Epidermolysis Bullosa Needs a Cure NOW!

“Losing a baby at birth, followed by a (46)

A few weeks ago I read a comment from someone stating how great the advancements for a cure for EB were coming along and how they were happy to wait.

I just bowed my head.

Just in the past couple of years so many children with EB, similar to Nicky and many even younger than him, have passed away, that this comment of being “fine with waiting” and “we’ll get there eventually” just upset me.

I am sorry, call me crazy, but my child has been “waiting” and suffering for almost a couple of decades now. RDEB (Recessive Dystrophic EB) is degenerative, meaning it gets worse with age. At this point Nicky is stable, but things could change on a dime. We are still holding out hope because there are so many people researching a cure at this time, but Nicky does not have TIME. He can’t wait much longer. Yes, he could live another 20 years (unlikely, but possible I suppose), but he could very well die tomorrow too. The future is uncertain for him and for us. At times I am amazed he made it this far.

The truth is, some “can” wait, sure, but many cannot. 18 years after this talk I had with Dr. McGuire at Stanford (in the image above, on the right) in August 1997, there are still no medications, no injections, nothing to ease the symptoms even slightly, nothing, nada, zilch. There is still *NOTHING* after 2 decades of research. (Bone Marrow Transplants have helped some-not cured-, but… Nicky is not exactly the ideal candidate, I wrote about it in the book “Butterfly Child“).

The only thing I can do is wrap his wounds and make sure they heal properly as to avoid the nasty and possibly lethal side-effect of infections and skin cancer. That’s it. When I get suggestions, it’s amazing to me how many people tell me ad nauseum to “take off the bandages and let his wounds breathe”.  I roll my eyes. Dear God. As if we enjoy bandaging! As if I look forward to spend hours of my day, every single day, taking care of wounds and making my son suffer! Common. Don’t they realize that if that would work we would do it?
Yes, I tried everything. Yes, we use cannabis, we use all kinds of creams, gels, you name it, I’ve tried it.
What Nicky and all children and adults like him need is a cure, not 5 or 10 years from now, they need it NOW!

That’s what we need.

In the meantime, please learn more about EB by reading the book! The kindle version of Butterfly Child is only $7.99 and the cheapest version of the paperback is available at the publisher (lulu.com) for $14.97.
Taking care of Nicky is expensive and I am unable to work because I have to take care of him, so by purchasing the book you are also supporting our family.

Let’s end the suffering, we need a cure!

Awareness is key!
Without Awareness there is no Funding
Without Funding there is no research
Without research there is no cure
Donate to find a cure: EBMRF http://www.ebkids.org/ and EBRP http://www.ebresearch.org/

End of venting. Thank you for listening.

Animation315_silvia

Comments

About

View all posts by