Black Hoodie with LOVE on front in White and OHHF logo on back bottom left
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Black Love Hoodie
Black Love Hoodie
Riley’s Story
Riley was born with tetralogy of Fallot with pulmonary stenosis and complete heart block. He underwent his first open heart surgery at just two months old to repair his heart and a few weeks later had a cardiac pacemaker placed. Since then he has had his pacemaker replaced twice, once after coding in the hospital, and will need additional replacements as he grows.
Riley is happy and healthy living at home with his amazing grandmother, Tracy, and enjoys playing catch, singing and working on PT and OT with Missouri First Steps.
Stella’s Story
Stella was born with hypoplastic left heart syndrome (HLHS) in December 2015 – a CHD that meant she would only have half a working heart and need a series of three surgeries to reconstruct her heart’s anatomy. She underwent her first open heart surgery when she was only two days old, and then additional surgeries at four months old and three years old. Thankfully her gifted surgeons were able to create a stable heart for Stella and she has been the light of her family’s life ever since!
Today Stella is a spunky and smiley five year old that brightens the day of everyone she meets.
Evie’s Story
Evie was born at twenty weeks with hypoplastic right heart syndrome. Her surgeons had planned a series of three surgeries to repair her heart, but unfortunately at birth they discovered her coronaries were missing or abnormal. At one week old, Evie was listed for a heart transplant. While waiting for her hero heart, she was placed on ECMO. At eight weeks old she was blessed with a second chance at life and received a heart transplant!
After eighty-two days inpatient, Evie went home for the first time where her parents are able to enjoy their happy and healthy baby girl.
Emmalyn’s Story
Emmalyn is a year and a half old and was born with Transposition of the Great Arteries (TGA). She had her first surgery at four days old and then again at nine days old. She has since had two angioplasties.
Emmalyn is healthy and thriving. She loves to eat fruit of all kinds, play with all of her animals, play in water, and be outside!
Calvin’s Story
Calvin was diagnosed with a congenital heart defect at fifteen months after the pediatrician noticed a heart murmur, along with other chronic respiratory issues. Calvin has undergone two open heart surgeies in order to re-establish correct blood flow and repair his CHD.
Although Calvin’s CHD will always require specialized care, he is now a happy and thriving four and a half year old. He loves to play golf, play outside, drive his gator and anything to do with trucks, tractors, trains or airplanes.
Allyson’s Story
Allyson is a five year old Heart Warrior. She was diagnosed with a single ventricle heart, heterotaxy syndrome, Noonan’s Syndrome and has survived multiple heart surgeries and a long list of complications over her little life.
Allyson is a preschooler and is so excited to go to kindergarten next year! She has three older siblings who mean the world to her. Allyson is extremely adventurous and her favorite thing to do is go to Target.
This girl is so full of spunk and fight and she is changing the world around her with her story.
NYTASHA TAYLOR
Chairperson
Express Scripts, VP Drug Sourcing
JENNY BROSSEAU
Vice Chairperson
SVP Diverse Customer Segments, Consumer and Small Business Banking
Wells Fargo
PAPPIM STEVENSON
Secretary
Supply Chain Sourcing Coordinator, BJC
LINDA HUNTER
Growth & Strategy Chair
Philanthropist
LAURA BOHON
Development
Co-Chair
Senior Executive Search Consultant, Benskin and Hott Talent Partners and Heart Parent
TONY IRACE
Development
Co-Chair
Owner, Packaging Concepts Inc.
TIM WALKENHORST, CFP
Financial Chair
Financial Advisor, Renaissance Financial
KATY LINNENBRINGER
Member At Large
Criminal Defense Attorney, Pelikan & Orris LLC
TEMEKA GAUSS
Advise and Counsel Lead, BJC Healthcare
MAGGIE STIEVEN JEWELL
Owner, MKS Designs
ANNE PENNICK
Susan G Komen, Product Owner
AMANDA SCHMITT
SVP, Commercial Banking Relationship Manager, U.S. Bank
MATT SCHMITT
Director, Business Development, Centene Corporation
Ari’s Story
Meet Ari, our spunky vivacious 5-year-old heart warrior, Miss America contestant, and Latoya heart mom extraordinaire. Miss Bey was diagnosed with complex single ventricle heart disease early in her mom’s pregnancy.
Their story has also been complicated by congenital heart disease and cancer. Latoya was diagnosed with breast cancer and underwent treatment before Ari’s birth.
Ari had her first open heart surgery at one week of age and her second at 6 months old. This dynamic mother-daughter duo are the real heroes.
Diego’s Story
Meet Diego, a 14-year-old heart warrior with Hypoplastic Left Heart Syndrome. He has endured multiple surgeries that rerouted his blood flow to maximize his heart’s function. These procedures have been so effective that he has been cleared to play sports and leads a life without constraints.
Diego is an active teen who loves flag football, video games, dad jokes, and walking his dog. His laugh is infectious and always brings an energy and joy that lights up any room. He is the oldest of two brothers, and despite the typical sibling rivalry, he enjoys hanging out with his younger brother and playing video games.
Diya’s Story
Diya was born in 2007 with double outlet right ventricle with hypoplastic left ventricle and has a twin brother. She underwent three open heart surgeries early in life. She lives a healthy life with the support of her cardiac team.
Diya loves socializing with her friends, is focused on good grades, and is highly athletic. She is a starting pitcher on her high school’s baseball team, training to be a powerlifter, and has earned the President’s Education Award for academic excellence. At age 11, she earned college credits in algebra and pre-calculus from Arizona State University. Diya is inspiring other heart children to find their possible.
Addison’s Story
Addison was born in 2008 with Hypoplastic Left Heart Syndrome with Shone’s Complex. This was unknown to her parents until she was emergently transported from her home in Yuma to Phoenix, Arizona, during her first week of life. Addie had five open heart surgeries and overcame two runs on ECMO, all before age five. Addie represents perseverance. Her favorite color was purple, and she loved backpacks.
Addie’s life was far too short, and her story is not perfect, but it is a life she made perfect for herself and everyone around her.
