Please help us with this

Not too long ago, I posted a link to a video called “Fix You” by Noah’s Hope. Now you have a chance to make that video earn money for research. A movie is coming out in January called Extraordinary Measures. It is about a father who goes to great lengths to try and save his children. From that movie, they are having a contest to win $10,000. Noah’s Hope’s video was entered and we need votes. Can you imagine watching your child/children slip away a little more each day? It is something no parent should ever have to see. Can you imagine being told that there is no cure for your child’s disease and the reason is lack of funding for research? It only takes a moment to vote but this could help save the lives of these children.

Just follow the link and either enter “Fix You” in the search box or click directly on the video in the picture quilt. The picture to click is of a newborn and once you have your cursor over it, it will give you the title. You can vote daily. If you are at work, please ask other’s to do the same. If you can, please copy and post the link and send it out asking for votes!

http://extraordinarymeasuresthemovie.com/#/quilt

This past weekend, we had the opportunity to go to Ohio to see Lance and several others. We met some families we had never spoken to before. I am always blown away at the strength of these families. Like the conference, we met some who’s children have already passed away but they continue to support each other. It’s really beautiful to see. Their faces light up just mentioning their child’s name. You can also see the pain that never seems to go away. We also met another family who have 3 children with Juvinile Batten Disease. Can you picture two loving parents trying to fight for what their children deserve? It is always a battle to gain even the simplest things that would make life a bit easier. Their daughter and Jacob spent some time together and it was so sweet. We went to dinner with Lance, Nancy (the nurse from BDSRA) and another couple and their daughter. Their son was not able to be with them that day. Like us, this family is trying to fit a lifetime into the short time they have. They are also fighting for their son’s life. He was diagnosed around the time Jacob was. We are very greatful for the experiences we have and the chance to share and be with other Batten families. Can’t imagine what it would be like without them.