Valerie is a Kansas City Area Autism Spectrum Disorder Consultant and a mother of two boys. In 1999, Rexin's first son, Noah was diagnosed in utero with complex congenital heart defects. After his birth, Noah spent his first eight weeks at Children's Mercy undergoing two open heart surgeries, two stints on ECMO (a type of heart lung bypass machine) and three heart catherizations. Noah struggled with feeding issues and delays after leaving the hospital, and continued with therapy throughout his life. In June 2001, at 23 months old, Noah underwent his fourth heart surgery, but it was not tolerated, resulting in a take down. He passed away in his father's arms 11 days before his second birthday due to complications from surgery. Raising awareness of congenital heart defects is a very important part of Rexin's life. She organized the Families Raising Awareness Heart Walk team for the American Heart Association in 2002, not only as a remembrance of Noah's June birthday but as a way of bringing together Kansas City families touched by heart defects. This heart walk team grew into Congenital Heart Defects Families Association. Rexin also serves as a council member for The CHD Awareness Quilt Project, Inc. as the project's Quilt Historian and Loss Liaison. Rexin's husband, Jonathan, serves as Executive Secretary of the Association.
valerie@chdfamilies.org

Watch Noah's Story

Julie Thomas Bowles, Co-Founder, is a Kansas City Area attorney and mother of three. After the birth of her twins in April 2000, doctors discovered that her son, Atley had a very rare and deadly congenital heart defect and would require immediate open heart surgery. He spent two months in the PICU at Children's Mercy, surviving two open heart surgeries and two heart catheterizations. Atley's recovery has been slow and complicated, including severe feeding issues and developmental delays, prompting Bowles to quit her law practice to concentrate on her children at home. She now devotes her remaining time and energy to raising money for congenital heart defects research and supporting other families in similar circumstances. She makes Heart Awareness Bracelets, custom awareness t-shirts, and designed special CHD silicone bracelets, and care magnets with all proceeds benefiting the Association. In. Addition, Bowles began the "Blankets from the Heart" project to provide cheerful, 100% cotton blankets to support children undergoing cardiac procedures at Children's Mercy Hospital.

Carrie Easley functions as our Carepackage Coordinator. She manages the "Care Packages from the Heart" program. Carrie is mom to 5 amazing kids including Grayson (HLHS).
carrie@chdfamilies.org

Jamie Bolen functions as our Public Relations Coordinator. She works with an outside groups to build connections for CHD Families. She also sits on the Family Advisory board at Children's Mercy Hospital. She is mom to Riley (HH), Lindsey (HH) and Bryce (HLHS).
jamie@chdfamilies.org

Kari Rawley functions as our Events Coordinator. She helps to plan family events and fundraisers. She also coordinates Doctor/Nurse Day baskets. Kari is mom to Hailey (HH), Parker (HH) and Ethan (TOF 18 Q deletion).
kari@chdfamilies.org

Peggy manages the database, face to face support, and support group meetings. She also keeps our evites and newsletters current. Peggy is mommy to Carter (HH) and Maura (single ventricle).
peggy@chdfamilies.org

Polly manages the Central Kansas CHD Families’ satellite meetings and family activities for Wichita and the surrounding areas. Polly is mommy to Elizabeth TOF, PFO (5/06) and to Robert VSD, PFO (4/11).
polly@chdfamilies.org

Michelle Oelke functions as our South Central Missouri Coordinator. She manages the South Central Missouri CHD Families’ satellite meetings and family activities for Springfield and the surrounding areas. Michelle is mommy to Lilah Rae (12/08/2008) TOF w/ PA.
michelle@chdfamilies.org

Mandy Fairbank serves as our Bereavement Coordinator for the group. Her role is to support loss families through the online and face to face support group meetings as well as other activities. Mandy is mommy to Griffin 4/14/2004 (HH) and Tristin HLHS 3/10/2008- 5/20/2008
mandy@chdfamilies.org

Jill serves as our donation coordinator. She helps oversee donation requests for the picnic and other activities. Jill is mother to Regan (8, TGA) and Jack (6, HH), and wife to Brad.
Jill@chdfamilies.org

Diane arranges local satellite meetings and family activities for Lawrence and Topeka. Diane is mom to Nathan (HH) and Adam (6/2005, TGA, VSD, PS).
diane@chdfamilies.org