CEO & Founder
In 2009 my life changed as I knew it; I became a mom to amazing little boy named Avery. His case of gastroschisis looked to be extremely rosy; small loop out, good size and gestational age, strong lungs and heart. However after 107 days Avery moved very unexpectedly to watch over his family, imprinting a legacy of hope and advocacy in my life.
I was “that mom” with my spiral notebook, searching the internet every minute I got trying to figure out when I was pregnant what to expect, where to go, during treatment I was looking for validation for medical treatment and case progression. There was not anything formalized at the time, and I knew from being told the numbers that there had to be many more like me.
With the encouragement of every “angel” that had been over his case- from family to his medical team, I started blogging, emailing and posting about creating a community, providing support, education and information for families affected and the world about the disease that was on the rise. At the time I did everything from my blackberry and raised funds from bake sales and music concerts.
It did not take long for things to take off, the need was great and there were many amazing families searching and hoping for the same things as my own family was. And what a lot of extremely talented, smart and tenacious folks there were and are! I am deeply fortunate to be a single part of such an amazing group.
Avery showed me more about myself in his 107 days than I had known in my lifetime. To further my advocacy abilities I am currently Bioethics Graduate student at Wake Forest University. Upon completion of my Masters in 2015, I intend on continuing into medical school for neonatology or pediatric surgery. My current research interests are in pediatric surgical innovations, pediatric organ donation, Family Centered Care and communication in the NICU, hospice and palliative medicine for perinatal, neonates and pediatrics, and Orphan Drugs. I am currently working on my thesis in Miracle Language in the NICU. I have attended the 2012 and 2013 NBDPN and been a member since 2012. I have also attended the Annual ASBH 2013 meetings and will present in 2014 annual meeting in San Diego. Gastroschisis families are the pulse and push for most everything I do.
I’ve been truly humbled to serve this organization and cause as the “Fairy Gutmother” in its time, and continue to be inspired by the families – survivors and angels – daily..