Hi & welcome to our event!
For those that don’t know, Rynlee is a beautiful little girl that was born in March 2022. Around 3 weeks we noticed abnormal movements, but doctors thought it was startle reflux or gerd at the time. Our little girl struggled to gain weight and was FTT, at 2 months old she barely weighed 8 lbs. At 3 months old, she started having new abnormal movements so we went to the ER got admitted and later was diagnosed with infantile spasms & early myoclonic encephalopathy. After several tests, genetics testing revealed she has a gene disorder called STXBP1. Rynlee has developmental/global delays, hypogammaglobulinemia, gerd, delayed swallow/aspiration, frequent illnesses/frequent hospitalizations, is nonverbal, and currently learning to walk with a gait trainer, and cannot sit unassisted. Despite all those challenges, she is the happiest little girl, has the sweetest smile, works so hard to achieve what’s asked of her, and warms everyone’s heart.
link to our team shirts: https://www.bonfire.com/rally-for-rynlee/
Toddler shirts: https://www.bonfire.com/rally-for-rynlee-toddler/
