Sad news

I am deeply saddened to say that we have two more Batten Angels. Matthew, age 6, and Ben, age 10 passed away this weekend. Please pray for their families. Both families are from the UK.

I am in tears. This is so hard. How is it that we can put a man on the moon and have the technology and seeminly limitless funding for research on so many things and yet, unable to find a cure for this? We still need help raising awareness so we can continue our search for a cure!

We have lost so many children in the last few months. I am not sure how many children have been diagnosed since then. I know that Jacob is the last one registered as being diagnosed in MI and that was in April of 2008.