Help Me Feel like a Rockstar!

And Just a Bit More About Me

Lena is the only girl in a houseful of boys. When she was born, she was immediately dressed in sparkles and bows. Unfortunately within the first 24 hours of her life, her bows were traded for EEG leads. She began having seizures within hours of her arrival. During the first year of Lena’s life she battled with many different types of seizures, all very difficult to control and some very damaging to her little brain. After a year of constant EEG’s, concoctions of different meds, terrible side effects, and long hospital stays her seizures were finally controlled. Although Lena’s EEG’s always showed a tendency toward seizure activity, the actual seizures had ceased. Also within that first year, Lena was diagnosed with STXBP1 Disorder, a genetic disorder where the brain does not produce an important protein that helps to form synapses in her brain. There is no treatment. There is no cure. However by he time Lena was 3, she was able to be weaned off all of her meds and she remained seizure free. That doesn’t mean her battles were over. Lena is delayed in all areas of development. She can sit and crawl and we work hard toward walking but we aren’t there YET. She doesn’t have words YET but she sure finds a way to tell her story. She also works hard with OT, Vision, Developmental, and feeding therapists daily! She works hard every day to do the things most of us can do without even thinking about it! Unfortunately recently seizure activity has returned to Lena’s life. And EEG’s are still a dreaded, but necessary, activity. Through all of Lena’s battles, she remains the happiest, most loving little girl around. She is a light to all who have the privilege to know her and love her. She is #LenaStrong and she’s her mom’s hero.