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Madeline Grace Hardin

Madeline Grace was born January 4, 2008. My pregnancy was typical without any prenatal complications and she was happy and healthy until April 21, 2008 when she had her first noticeable seizure. Several days before I had noticed her rolling her eyes just once and thought nothing of it. She was taken to the hospital the following day, after speaking to the pediatrician, an EEG was performed. That afternoon she was admitted to the University of Virginia Children’s Hospital. They did numerous tests including an MRI, neuroopthalmology exam, genetic screening and much more. The results of the MRI showed evidence of severe partial agnesis of the corpus callosum and small posterior interhemispheric cyst. She suffers from bilateral cortical lacunae (lesions on her eyes). 4 lacunae around the left disk and 1 around the right. The doctors then confirmed that she had Aicardi Syndrome. This was very foreign to us and at that point all we could do was come home and do research on the internet.

Madeline has been on Trileptal, Prednisolone, Topamax Sprinkles, Pepcid and Zantac. She currently is on Topamax tablets, Keppra, Diastat (PRN) and Zantac.

Madeline has had a sleep study done, met with a pediatric orthopedist and currently is awaiting to see a pediatric opthalmologist. She is seen by Infant & Toddler Connection of Virginia. Currently she is seen twice a week by Beth Ann her physical therapist and every other week by Karen her baby instructor. Right now she is working on sitting up, rolling over, bearing weight and holding objects.

Right now our household consist of Madeline and myself. We are surrounded by many people who loves us including my family and our friends from Salem Evangelical Lutheran Church. We pray each day for continued strength and for Madeline to live a life of happiness. Thank you for visiting our page.

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