The beginning of this year has been by far the most difficult for my family... the year started off amazing with the birth of our second babygirl Jaylene but quickly our happy blissful moment turned into the biggest fear of our lives when Jaylene beg...
Kyle had symptoms from birth- difficulty feeding, severe reflux, hypotonia, exaggerated startle, and missed developmental milestones. His seizures started at 9 months of age. He went on to develop Parkinsonism (tremor, ataxia). When he would get s...
We just got the news after genetic testing that our beautiful 3 year old has Stxbp1. We noticed at 3 months she was not developing like her twin sister and her older brother had developed. She made some gains at 5 months then seemed to regress so we ...
