Ally's Ohtahara

When our daughter was roughly 7 months old we got a diagnosis of Ohtahara Syndrome. They told us she would not live past the age of 2. I am going to try to share our experience. We were blessed with our second daughter March 2012. In the first few days she was so tired and not eating. She was not gaining weight and she had jaundice. After a few days we realized that she was having seizures. I took her to her to the doctor and that was the one of the worst days of my life. They confirmed she was having seizures and a lot of them. The doctor sent us to hospital immediately. Where they started testing. In Ally's short life she has had blood work, several MRIs, several EEGs, spinal taps, urine cultures, x-rays, and a feeding tube placed. We have also been to the Cleveland Clinic, Childrens in Memphis, and Childrens at Vanderbilt. When the neurologist first mentioned Ohtahara Syndrome I immediately looked it up online. You cannot find anything good about this syndrome. I kept reading that these babies die before the age of 2 due to respiratory illnesses. My heart sank and we cried a lot.  We had to grieve the child that we thought we were having!  The doctor also told us that if Ally got RSV she would die. She did get RSV and did great. We did end up in hospital but she is still with us. She is a fighter. We know ultimately its in GODs hands. Ally is almost 3 and she is like a newborn. The doctors say she will never walk, talk, laugh, or play with her sister. The doctors said there was really nothing left they could do but try to control the seizures. They told us to just love her and try to enjoy the time we do have with her.
She is an amazing little angel. We are doing just what the doctors said. We are trying to let her experience life. We take her places and do things when we have the opportunity to. Our first priority is to keep her healthy and the second is to make as many memories with her as we can. She really likes swimming and the movies. Ally and I spend about 90% of our time in therapy, or at doctor office, or at hospital. So it is hard to find the energy or the time to make good memories that are not in one of those places.

She has a short life expectancy, several seizures every day, chronic lung disease, asthma, a feeding tube, an ASD (atrial septal defect), and sevier mental delays! She has so many needs right now. The funds that will be raised on this site will be used for Ally!  Kids like Ally need special equipment for everyday life and insurance does not cover all of it!  I will post when Ally has a need that insurance wont cover!  Thank you so much for donating, loving and praying for our sweet daughter and family! I know the lord will give us what we need!
She does have a Facebook page Baby Ally's Ohtahara
She also has caring bridge page
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Trina Norton Phillips 
Greenback, TN
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