Showing posts from May, 2012

Schiz kid of the week Yanni

My journey with my daughter Yanni began in December of 2001, when she was born. I had a standard scheduled Cesarean-section. Yanni is the third of five children and the two born before her were also c-sections. Surgery went wonderfully, and Yanni weighed in at a beautiful and healthy 7 pounds 8 ounces.  But right after birth, her blood sugar dropped and so did her oxygen saturation levels. Unfortunately, the doctors just couldn’t figure out why. They placed her in the NICU, where she stayed for 4 days until they believed she was stable, and sent us home. I couldn’t have been happier, because although she hit that initial speed bump, she seemed to have come through just fine. She ate very well, and behaved like any newborn would. As time went by though, I noticed that Yanni didn’t seem to be “seeing.” She wasn’t tracking objects, and her eyes were bouncing around a lot. I brought it to the attention of our pediatrician at the TIME, and she blew it off as normal newborn behavior. I lis…

Story of Gage. Our Schiz kid of the week

Gage’s Story June 17th 2008, my husband Dustin and I welcomed Gage Rayden into the world. With an overall "normal" pregnancy we were excited to meet our new baby boy.....that was until we noticed something was wrong and no one was telling us what it was. Hours after my C-section they still wouldn't let us hold or even be in the same room as Gage, they kept telling us that he just wasn't thriving the way that he should and he needed to rest. We went the entire night without being able to hold Gage; no one had been able to hold him except for Dustin right after Gage was born. The next morning the pediatrician came in and told us that they were going to move Gage to the nearest children’s hospital, there was something wrong with our baby and they had no clue what it was. My heart sank, what could be wrong and what was going to happen to my precious baby? The next few days was like a whirlwind, it seemed like years before we knew what was going on, but at the same time i…

Gtherapy Breakthrough for Schizencephaly


Now this is dedication to Schizencephaly awareness!!

Vaya Schizencephalyawareness Wissman-Shrader Peyton's mom's tattoo. Unlike ·  ·  · 17 minutes ago ·  You and Julie Schizencephaly Awareness-Whitfield like this.

research for rare brain disorders

Dr. Juan Pascual receives two major grants for rare brain disease research DALLAS - December 6, 2011 - Dr. Juan Pascual, assistant professor of neurology and neurotherapeutics, physiology and pediatrics, has received two major grants that will fund initiatives at UT Southwestern aimed at forwarding research into rare brain diseases in adults and children. NAMDC Grant A grant from the National Institutes of Health provides three more years of support for UT Southwestern's collaboration with Columbia University and an array of other networked institutions on rare brain diseases research. UT Southwestern is part of the North American Mitochondrial Disease Consortium (NAMDC). It was established via the U54 NIH funding mechanism to create a network of clinicians and clinical investigators in North America who follow sizeable numbers of patients with mitochondrial diseases and are involved or interested in mitochondrial research.
Dr. Juan Pascual (R) talks with researcher Min Li, M.D. …