We wanted to give you a brief update from the Annual Batten Conference in Nashville. We had an amazing time meeting and connecting with families that are living with this horrible disease and taking over our children's lives.
When we went, we thought Charlee was already so far gone. With her already losing most of her sight, mobility, communication and now experiencing worsening seizures...we thought our girl was pretty bad off. The truth is she still has A LOT of life left in her and we all need to take advantage of every moment we can, before it's too late! While we were there, Charlee started doing things she hasn't done in months. She said Jericho's name. She was walking with support. She was happy, laughing and even trying to dance! 
We all need to capitalize on every single moment we have with her. We want you to be a part of Charlee's precious life! I don't want any of us to have regrets of not taking time with her while she can still interact. She has taught me so much and I am beyond blessed to be her mother. I know sometimes people don't know what to say, so they don't say anything. We saw a quote at the conference that I wanted to share "The only thing scarier for families than facing Batten Disease is feeling alone." I also know some are afraid of getting too close because it will hurt too bad when she gets called home. Please don't let this keep you away. We are not asking you to come take her...we are asking you come visit, spend time with her, enjoy her laughter, smiles and sweet spirit. I know she will touch you and inspire you like she does me every day!
We wanted to share this with you because we love you all so much and we don't want there to be any regrets when she is gone.
All our love,
Catrina & Jeff
