O U R S T O R Y
- W H O W E A R E, W H A T WE DO, A N D W H Y W E D O T H I S -
MEET VALERIE JANKE REXIN,
CO-FOUNDER AND EXECUTIVE DIRECTOR
Valerie Rexin is a Kansas City Area Autism Spectrum Disorder Consultant and the 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 Hospital 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 takedown. 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. Contact Valerie: valerie@chdfamilies.org
VALERIE REXIN WITH HUSBAND JONATHAN, SONS JONAH AND NOAH REXIN.
MEET JULIE THOMAS, CO-FOUNDER, DIRECTOR AND COUNSEL
Julie Thomas 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 that would require immediate open heart surgery. He spent his first two months of life in the PICU at Children's Mercy Hospital, surviving two open heart surgeries and two heart catheterizations. Atley's recovery has been slow and complicated, including severe feeding issues, mild cerebral palsy, serious developmental delays, and additional cardiac procedures. This prompted Thomas to quit her law practice and concentrate on her children at home. She now devotes much of her spare time and energy to raising money for congenital heart defects research and supporting other families in similar circumstances. As a top walker for the American Heart Association, she has received many awards, and Atley was chosen as the Kansas City Heart Walk Child in 2005. She designs many of the Association's awareness products, logos, and American Heart Association Heart Walk team shirts. In addition, in honor of Noah Rexin's fourth birthday, Thomas began the "Blankets from the Heart" project to provide cheerful, 100% cotton blankets to children undergoing cardiac procedures at Children's Mercy Hospital. Contact julie at: info@chdfamilies.org
JULIE THOMAS, WITH SON, ATLEY, 13 YEARS OLD.
- M E E T O U R V O L U N T E E R C O O R D I N A T O R S -
MEET LEAH BERGSTEN, CO-CAREPACKAGE COORDINATOR
Leah is wife to Dillon and together they have four boys, Maxton, Kyler, Reese, and their new addition Luca. Kyler & Reese are identical twins who were born at Children’s Mercy in 2016. Kyler was diagnosed in-utero with HLHS and spent 3.5 months in CMH’s PICU undergoing numerous surgeries and procedures. Ultimately multi-organ failure took his life. He passed away in his dad’s arms and has been deeply missed ever since. We are grateful for any and all means that we are able to give back to Children’s Mercy and the ever strong Kansas City heart community in memory of our son.
LEAH AND FAMILY.
MEET STEPHANIE HART, CO-CAREPACKAGE COORDINATOR
Stephanie is mother to 3 sweet girls, the youngest of whom was her heart baby, Abigail. At the 20-week ultrasound TGA, VSD, HRHS, and Double Outlet were identified, plus club foot was suspected. She was born at Children's Mercy Hospital (downtown) as a result, though she did not have clubfoot the other heart diagnosis were confirmed. This was during the fall months of a COVID year (2021), so visitors were limited. Abigail had her first open heart surgery at 18 days, and 6 days later aspirated and coded during a feeding on 4 Henson. She was among the first babies to stay in the new Cardiac Intensive Care Unit (CICU). She spent the next few weeks on ECMO and other forms of life support. It was during this time her grandparents and siblings first met her. Her kidneys gave out during her time on ECMO, and she began having seizures. After 40 long days of only being able to hold a hand or foot, she was able to be held in a lap again - this mama's greatest memories were made during lap holds as a result of learning how precious such a common thing could be. After learning her dialysis would need to be turned off within a few weeks once doctors had given up hope of kidney function returning, Stephanie persuaded them to do another diuretic challenge. It showed enough hope to offer a 2nd challenge, and she never went back on dialysis after that, proving that her kidneys had indeed healed. It was a miracle none of the staff could explain, but all were excited about it. Abigail remained at Children's Mercy through her other surgeries, until getting through her Glenn procedure at nearly 9 months old. We spent nearly a month on 4 Henson again preparing to move Abigail home for the 1st time, and it was a wonderful time to develop relationships with her sisters. During the recovery from that, a brain bleed was discovered, then dramatic O2 stat drops that resulted in yet another return to the CICU. After 40 weeks of battles to stay alive, she graduated to heaven with family around, as summer had relaxed the visitor policies. Our family still celebrates her "kidney miracle day" with diuretic drinks and kidney bean chili, each March.
MEET KRISSY RINGO, HISTORIAN
KRISSY RINGO AND FAMILY.
Krissy Ringo serves as CHD Families' historian. She maintains the CHD Families "yearbook". She is mom to Zach, Ayla, Matthew, and wife to Kevin.
JILL GETMAN, DONATIONS COORDINATOR
Jill Getman serves as CHD Families' donation coordinator. She manages incoming donations that are in memory or honor of someone. She also coordinates Doctor/Nurse Baskets. Jill is mother to Regan (TGA) and Jack, and wife to Brad.
POLLY GIEBLER, CENTRAL KANSAS COORDINATOR
Polly Giebler manages the Central Kansas CHD Families’ satellite meetings and family activities for Wichita and the surrounding areas. Polly is mommy to Elizabeth TOF, PFO and to Robert VSD, PFO.