JorDawn Ramirez


Hub Leader

[email protected]

My journey began in 2017 when my 3rd daughter was diagnosed with Gastroschisis during a gender reveal sonogram. I had no idea that my life would be forever changed that day. I went through the rest of my pregnancy feeling alone, terrified, and nervous for the unknown future. Numerous appointments, tests, and biweekly sonograms followed after the diagnosis of Gastroschisis. Due to complications, my gastro warrior, Jevyllíaña, was born prematurely at 35 weeks on 01/05/18. She had her Gastroschisis repair (closure) surgery on 01/08/18 and spent 20 days in the NICU. 

Unfortunately, I did not become aware of Avery’s Angels Gastroschisis Foundation until late December of 2017 and I wish I would’ve known months earlier. The support I have received and friendships I have made with other Gastro families has positively impacted my life. So far, we are fortunate to have had no complications from Jevyllíaña’s Gastroschisis; however, if something comes up in the future, I am grateful to have others around me that have went through similar (and very different) experiences. I am eager to spread awareness about Gastroschisis and Avery’s Angels Gastroschisis Foundation so nobody else has to experience this on their own! As HUB Leader of Kansas, I am looking forward to getting to know and provide support to Kansas families while planning Awareness Day events, outreach projects, and having various fundraisers!