Boats, Babies, Blisters...Battlestar Galactica

       Hello! 

         I'm Emily.                                                And this is my husband, Brian

           

We were married in January of 2015 and lived happily ever after, the end....Not exactly. Life has been pretty busy since the big day. We've bought our first house and acquire all the new home projects, I started a new job and we got a puppy! 

                                                    This is Renly

He's pretty adorable... and extremely naughty! He terrorizes our 2 cats, covers the yard in sticks and barks at absolutely everything. He's the best! This naughty little puppy is only one of the many blessings in our lives. We have stable, rewarding jobs, a home of our own and a wonderful support system of family and friends..but something is missing. Any guesses??? Yup, its a boat!! ;) Kidding! While a boat would be nice, what we are truly missing is a child. 

So, what's the problem? 

Like most things in life, making babies is hard! Or rather, making healthy babies is hard. You see, Brian has a very rare and painful genetic skin condition called Epidermolysis Bullosa. (DO NOT GOOGLE IT! You will get a lot of horrible pictures of some very sick children.) If you are curious, later on I will add some pictures of Brian when he was little along with some more recent ones. You'll be able to see exactly what we are dealing with here. 

In a nutshell, EB causes the skin to blister from some of the simplest things, and sometimes what seems like absolutely nothing at all. Whats even worse is that there is a 50% chance that our children will be born with this condition...bummer. Brian's mom and grandma both have first-had experience in raising a child with EB and they have made it clear that it is NOT something we want. Imagine learning to crawl when your skin blisters after the first hour. Needless to say, we have been researching ways to prevent this. 

Brian and I discussed our desire for children as any couple does. The conversations started simple and as our relationship progressed and we decided to spend the rest of our lives together, the conversations grew in their seriousness. We knew that if we wanted to start a family, it would probably not be the conventional way.

Our journey towards a healthy baby started right after our wedding. We met with a Geneticist who let us know some of the options we have.

1) Conceive a baby naturally with a 50% chance of passing on EB.

2) Conceive a baby naturally and perform a test to determine if the baby has EB. We could then "choose whether or not to continue the pregnancy"... (not even a discussion we will be having!) 

3) Use In Vitro Fertilization along with Preimplantation Genetic Diagnosis. This would bring the chance of our child being born with EB down to 0.01%. A lot better than 50% if you ask me!

For the past year this has been our focus. Even with so much going on and so many changes, this is always at the back of our minds. There has been a lot of talking, worrying and praying. Right now we are working towards taking the next steps towards starting a family. 

We are planning on using this blog to keep our family and friends updated on our progress. Many of our loved ones are aware of Brian's condition and some may know of our hopes to prevent it. Some of you may be hearing about it for the first time. Whatever you know or don't know, I hope this blog can help keep you informed. 

-Emily