After having a terrific vacation in Southern California at Christmas, this time we're heading a little farther north to fabulous Los Angeles.I’m not really sure where to begin with this post. In fact, I’ve gone back and forth on whether or not to even post this at all. On one hand, we need your prayers. On the other hand, I don’t want to jump the gun by saying anything we shouldn’t. With that said, I’m going to tread lightly.
About 2 years ago we first heard about a potential EB treatment that was being worked on at the University of Southern California Medical Center in Los Angeles, California (USC). While (at the time) the study had only been done on lab mice that had EB, it had been successful. The basic gist of the study was that they took what the mice didn’t have, Collagen VII, and injected it under their skin. The result was that their lives were prolonged and the effects of the mouse EB were gone. In all honesty, this was the first research that really made us excited. Much of the other research was very invasive and meant the children would spend months in the hospital. I never judge what another parent chooses to do when their child has health issues...each family has to decide what is best for them. However, Joe and I have always felt that for Ella, the risks associated with the other treatments were not worth taking given where she is with her EB.
This collagen injection research just seemed to click with us. It just made sense. For years people have been having collagen injected into their face to reduce wrinkles. While Ella is missing a different type of collagen, why couldn’t the same procedure be used to help her skin?
So now to the big news. This month we are heading to USC in Los Angeles, CA to have Ella pre-screened to participate in this collagen injection study/clinical trial sponsored by the National Institute of Health. This pre-screening does not mean she will automatically participate in the clinical trial. This just gives us the opportunity to check things out and get our questions answered, and it gives the doctors the opportunity to see if Ella would even benefit from this study. It is possible that we will come back from LA and Joe and I will say, “No, this isn’t for us.” There’s also the chance that we’ll go and feel good about everything, but for one reason or another Ella won’t fit what they’re looking for in a participant. The reason we feel strongly that we need to at least go out to LA and check it out is because Ella deserves it. She deserves for us to, at the very least, explore any possible treatment out there. She has put up quite the fight the past 4 years, and if this treatment will increase her quality of life by even 1%, then for us it’s worth it.
I know there are a million questions running through your head. The first is probably, has this been successful in other people? Well, as far as I know, it hasn’t been done in people yet. It has been done in 3 different types of animals and has been successful in those. They are currently searching for people with RDEB (Recessive Dystrophic Epidermolysis Bullosa) who are over 18 to participate in the first phase of the study. Once those people have received injections (just in one part of their bodies, not everywhere), then they’ll have to examine the findings, report on those, etc. All that to say, this is going to be a LONG process and assuming we agree to go ahead with it, and assuming Ella is accepted, it could still easily be another few years before things get rolling for kids in her age group.
You’re also probably asking, are there any risks? Yes, of course. With any clinical trial there are risks associated. An obvious one being that her body could completely reject the collagen or that she could have some sort of reaction to it. While you and I have bodies built with collagen VII, for Ella it is a foreign substance. As far as we know, her body doesn’t know what it feels like to have collagen VII. It’s possible that as soon as the collagen VII is injected into her body that it would revolt. We just don’t know.
At this point, what we ask for is your prayers. Please pray for safe travels and pray that all goes well during our visit. Pray that Ella is cooperative and handles the blood draws, biopsies, etc. It’s not going to be an easy trip. It’s a long distance, a 3 hour time difference, Ella will meet several new doctors, and several labs and biopsies will be taken. That said, we strongly feel like this is the right step for our family. Ella is not getting any better…in fact, her nutritional levels have decreased, her wounds are taking longer to heal and her hands are becoming severely contracted, so we believe the time is now to take proactive action to start fighting against EB.Thank you all for your support over the last 4 years. We appreciate all of your prayers.