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Lillian Jo Utley

Lillian is 17months and the light of our lives. She has a 4 year old sister named Piper who loves her dearly. My husband Donnie and I will be married 5 years this June. He is a US Marine and currently stationed in Okinawa, Japan. Unfortunately we could not join him, because they do not have the care for Lilly that she needs. He will be back this July. We can't wait. I work from home and take care of our girls!

My FB friend Pam told me to join, because this is the best group of Moms anyone could wish for.

Lilly has 4 different types of seizures, which are all under control as of right now…seizure free for 1 month YAY. She rolled over on her first B-day ..and I swear she said MOMOMOMOMOM the other day. She is struggling to sit, but I know she will get there. She is a fighter. She has cervical torticollis and hypotonia. She has an arachnoid cyst, which "PRAISE THE LORD" is not causing her any problems. We are not sure about her vision at this point.

I started the Aicardi Syndrome cause of Facebook thinking.."HEY I can get my church gals to join..never in my wildest dreams did I think the cause would reach over 1400 members….the more the marrier.

I'm looking to connect…share stories…and most of all find support..after all I am sure we all have these days we just want to SCREAM.

Fran

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