This One is Important. For Real.

I have been fooling with a way to open this post. Can't find one so I am just gong to say it: My twins have a disease. Currently there is no real treatment and no cure. It is called Vascular Ehlers Danlos, or VEDs and it took the life of their birth mother. It is not going to take their lives and the reason I know this is because when we learned that they had it, 10 years ago, I felt strongly that God was telling me He had it covered for them. But that doesn't mean that there isn't work to be done.

The night Anne died, I told her doctor that Anne's mother had died, at a young age, under strange circumstances. I knew that she had an aunt who had died at a young age too. It wasn't until we lost Anne that the puzzle pieces started to fit together and there was a clear diagnosis. Initial tests for the children gave false negative reads but after Anne's brother, who had also tested negative for the disease, died in his 30's 8 years later, the girls were tested again and we learned that Christine and Jennifer had the gene. They had the disease.

There were certain indications. People with VEDs often have large eyes, small noses and translucent skin. In truth, they are often very beautiful as was Anne; as are my girls. They often are born with club feet. Anne, her brother and her sister had this condition. My girls do not. We have been very careful with the girls.

In the most basic of terms, VEDs attacks the collagen in their bodies, making it brittle and unable to hold together their organs. What occurs most often in VEDs patients is spontaneous arterial rupture. All of their organs are vulnerable so excellent health is key. Once we learned of their condition, they did not participate in sports. We watched them carefully. We avoided things that could be hard on their bodies.

We had been counseled not to tell the girls until they were young adults so it wasn't until two years ago that we told them. It has been a very difficult thing for all of us, especially them to live under. Amanda was inconsolable for a time - trying to reconcile how her darling sisters should have this horrible thing and she does not. But they have done extremely well; it hasn't slowed them at all - I believe because they too have faith that they will be taken care of. I am immeasurably proud of them. And we have had so many people praying for them for so many years. If you need evidence of the power in prayer - please leave me a comment and I will get back to you.

Interestingly, Grace has a form of Ehlers Danlos as well. This is such a bizarre coincidence that it defies all earthly explanation. Grace had to have inherited this gene from either me or Bob. Which tells me that Ehlers Danlos is a lot more common than originally thought. Grace's form is not life threatening but it can be debilitating. Her joints are loose, also a connective tissue (or collagen) disorder. In a nutshell, her joints can fall out of place easily and the threat to her is similar to severe arthritis as she ages. We work hard to build the muscles around her joints. She too, is excused from sports.

But what does it all mean? Well it means that I am supposed to do something about it. I don't know what it is yet, but I'm going to start here. Recent research in France has given some very promising news about the use of beta blockers in VEDs patients. It appears that they help protect against arterial rupture. More research needs to be done. Funding is desperately needed.

There is an organization called Ehlers Danlos Cares at www.ehlersdanlosnetwork.org. If you go

to this site and click on "Donations", you will see that we are trying to raise $75,000 to begin funding more research in Maryland. Perhaps you can contribute something, anything. Next, if you are my Facebook friend, go to my page and click on the "Chase Community Giving/Ehlers Danlos Network Cares" icon and vote and then add the app to your FB wall and ask your friends to vote and add it to their wall, and so on.

I believe that God has my girls covered - and it could easily be an out and out miracle that saves them. But maybe the miracle is that you will read this and pass it on.

And God bless you!