On May 4,2014 we welcomed our beautiful 7lb 1 oz baby girl Ariana Alexis Duhart. She was perfect with 10 fingers and 10 toes what you always look for. We were so happy. her first night was great she hardly even cried, but we couldn't get her to eat. The nurse had to put breastmilk on a spoon just to get a small bit in. They took her for Random testing. As we waited for the nurse to return her in walked the doctor. Her oxygen levels had dropped and she was moved to NICU.When we were finally able to see her she was hooked up to machines and tube down her throat to feed her. Doctors said she was having seizures and don't know why. Ten days later they still couldn't find the cause and airlifted to her to Shands. For months she was put on different meds and blood draws.She had continuous tests done all coming back  negative.  Her MRI showed a thinning of her corpus collosum. We had a 3 month wait for one last test. Meanwhile she went thru various meds and ketogenic diet. Doctors took her off the ketogenic diet cause she was losing to much weight. She was so tiny and fraile. Her seizures were now from 70+ to 20 a day. She had surgery done to place a gtube so she could come home and still be able to eat. In August we finally got her diagnosis SCNBA. There was only 1 other case they knew of. After 4 months in the hospital we were able to bring her home. Today I've met a support group approximately 40 other families. All we know is it causes intractrable seizures, developemental delays, autisim,hypotonia,etc it varies from patient to patient. Ariana is now 1 years old and still almost like a newborn. She is unable to hold her head up , can not sit up & has low tone in her legs. She's so special to us and it's sickening to see the cost of special needs equipment. Strollers,carseates, chairs to sit in, bath chairs etc. It's just ridiculous the cost. It's been a roller caoster ride but she's well worth it.   Ruth Duhart Ariana Mother