We are Frazer & Dana Gieselmann - we have 3 girls, Ann Carlyle (10yrs), Milla & Elle. In Aug 2013, Milla had her first seizure just before turning 3yrs old. We started this blog primarily to give updates on Milla's condition. In Oct 2014, we learned that Milla had Batten Disease, a rare & fatal brain disease. A few weeks later, we learned that Elle also has this disease. Milla passed away Nov 26, 2016. She was 6 years old. Elle passed away May 4, 2019. She was 7 years old.
Saturday, November 12, 2016
Commercial Appeal Story
Wow - just got this link. I think it's going to be in the Sunday paper...
If you do not know them, you should connect with the Craig Benson family in Austin, TX. Their Beyond Batten Disease Foundation doing good things.
ReplyDeleteAbsolutely
DeleteI am not sure if you have a Facebook page or connected with the batten organization, I would like to help you, my son had batten disease as well,
ReplyDeleteBraley_b@yahoo.com
William's Journey