| The Congenital Heart Defects Families Association About Us |
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| 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) Click here to contact Carrie |
| Josh Harris functions as our Family Service Coordinator. He manages our Highway Clean up program and our "Wishes from the "Heart" Josh is dad to Blake (COARC) and Cooper (HH). Click here to contact Josh |
| 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) Click here to contact Kari. |
| Jamie Bolen functions as our meal coordinator. She manages our "Meals from the Heart" program that provide meals to families at Children's Mercy Hospital during inpatient Heart procedure. She is mom to Riley (HH), Lindsey (HH) and Bryce (HLHS) Click her to contact Jamie. |
| Valerie Janke Rexin, Co-Founder and Executive Director, 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. Click here to contact Valerie. |
| 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. Click here to contact Julie. |
Sarah Rawley (TOF) functions as our
Adult Liaison. She manages the
products for the group. She also
support other adults in the group with
CHD. Click here to contact Sarah.
Adult Liaison. She manages the
products for the group. She also
support other adults in the group with
CHD. Click here to contact Sarah.
Mechelle Smokorowski serves as our Donation
Coordinator for the group. Her role is to request
donations of money or items to support the group.
She also handles the Donations from the Heart
Certificates. Mechelle is mommy to Jackson (HH)
and Garrett (HLHS) Click here to contact Mechelle.
Coordinator for the group. Her role is to request
donations of money or items to support the group.
She also handles the Donations from the Heart
Certificates. Mechelle is mommy to Jackson (HH)
and Garrett (HLHS) Click here to contact Mechelle.
