Hi Everyone. We've found out this week that it is confirmed.
Bridget has Late Infantile Neuronal Ceroid Lipofuscinosis or a more general term is Late Infantile BATTENS Disease. No one ever quite prepares you for this news and I'm feeling too many things to put them into writing right now. Here are 2 websites to find out more
http://www.ninds.nih.gov/disorders/batten/batten.htm
www.bdsra.org
We have a lot of things in the works.
First off, we're in the midst of designing a website for Bridget.
Second, we've contacted the Director of Battens Association and the physicians in charge of clinical trials at Cornell through National Institute of Health. There's also another avenue through Seattle.
We will have all the information in Bridget's website,
so again please stay tuned and be patient.
Love and prayers to you and mostly to our angel.
9 comments:
Love and prayers indeed. I don't know what else to say. Thank you for keeping us all informed so that we can, at the very least, keep you all in our thoughts and prayers.
Bev
Thanks for letting us know, Sarah.
We all love you and are praying for all of you.
-Shannon
We haven't seen each other in so long... but please know you and your family are on my mind and in my thoughts and prayers.
Sarah
Hi Sara and Dave,
We are thinking about you and your beautiful family everyday. May God give you the strength and support that you will need to help Bridget. Our thoughts and prayers are with you.
Penney and Gary
Dear Sara, I have been following your blog site for quite some time. Katie Koz shared the site with Suzie Bell Perkins, who shared it with me. Your family has endured more I can imagine for the last fifteen months or so. You faced your issues with an incredible amount of courage, strength, and determination. Bridget is such a beautiful little girl -- love the photos attached to your blog. We will continue to keep you and your family in our thoughts and prayers, as you continue to face Bridget's challenges, and we look forward to Bridget's website. Love from Janet Bell
Hello Sara & Family,
I was just stopping by to see the latest report on "MY BRIGGI" , we are hoping & praying for the best results in her treatment. With the latest advances in medicine we are sure there will be a break though that can help Briggi out.
I'm so glad to be a part of your wonderful family. Every day that I spend with your household seems to be for a greater purpose.
Our Best Wishes,
The Lara Family
Sara,
I am thinking of you all the time. You are in my prayers. You are all so strong!
Mary Kay
Love and Prayers for you, Bridget, Harrison and Dave. May God watch over you!
Hey there from an Old Grover! I check in on you and your family often, and each time I am inspired, hopeful, and sending lots of prayers your way!
Post a Comment