All I Want For Christmas…It’s not what you think

All I Want For Christmas… Is not what you might think.
It looks like we will not be leaving now until just after the first of the year.  Dr. Machiarinni called me and he told me that he is perfecting a special matrix base to grow the stem cells on to make the new airways. This is being done to make it more porous but at the same time stronger for my specific EDS needs and should help grow and hold the tissue better. This is a MAJOR BREAKTHROUGH both for me and for EDS advancement, as well.  So we have a bit more time to raise funds and Steven and I will be home for the holidays. It’s scary because of my decline but, it has some real benefits as well.

That brings me to something very near and dear to my heart.  We have not seen Steven’s parents since this all began, over four years ago.  They turned 82 and 85 years old this past Fall and they are missing us greatly as well as being really concerned that there is a real possibly they might never see me again as I will be heading into a serious transplant procedure expected to last over 24 hours in surgery alone and in a foreign country thousands of miles away.  Mom and Dad have no money as they have given all they have to save my life.  We don’t have any either because we are putting every dime we have into the same cause.  They can’t drive out because it would be too much for them physically to spend four to five days on the road and we can’t drive their way because of my health (and Steven’s) right now.

All I want for Christmas is to be able to see these precious people in my life one more time before I go into this “unknown.” I was wondering if people have frequent flier miles or “hotel nights” they would be willing to donate to make this dream come true for me? Or people could help by donating towards this, we could use anything left over towards the transplant needs, afterward.  Checks could be handled  the same way as we have been doing them – just mark them Rachel’s Christmas Wish.  They can still be sent through the church at the same address or on the site. I know it is a lot to ask, but I have no other way to make this happen without help.

Mom and Dad would have to fly from either St. Louis or Chicago to Burlington, Vermont.  Unfortunately, we won’t be able to travel to Boston or Albany or somewhere far away to get them, in my current condition.  There is a Court Yard and a Hilton just one block from where we live downtown which is within walking distance from us.  I am going to see if someone local will try to get them to “comp” a room or reduce their rates for a three night stay for this purpose. (Unfortunately, our tiny apartment doesn’t have any spare bedroom space available for them to stay and it’s full of medical equipment these days.) If that doesn’t work, we can try other hotels in the area. I will try to find someone who might let them use a car locally for that time because it will help them feel more independent while they are here (which would mean a lot to them).

It doesn’t have to be at Christmas, Steven has a birthday on December 2nd and it could be anytime between then and Christmas so we can find the best rates. Steven says he doesn’t want anything else for his birthday either if we can do this.

THERE IS SIMPLY NO WAY EXPRESS WHAT THIS WOULD MEAN FOR STEVEN AND ME.  It is all I want for Christmas.  Help me, if you can.