Recipient Stories

By Becky HuffmanMommy to ShylaBorn December 2014Bronchialpulmonary Dysplasia, Cerebral Palsy  Shyla came to us through foster care when she was 9 months old, in September of 2015. We did not know she was medically fragile at the time, but there were several indicators from her past medical history and some reported care issues with her biological…

Whitney WoodringMommy to WillaBorn November 2017Congenital Central Hypoventilation Syndrome Willa is our second child. Like most parents, we were excited to have a new baby, to give our other daughter a little sister to grow up with and play with.  Willa was born six weeks early (at 34 weeks) in November 2017. We knew that…

By Allyson MattinglyMommy to ArcherBorn May 2021BPD (Bronchopulmonary dysplasia) – chronic lung disease Overall, my pregnancy with Archer was normal. At my 20-week anatomy scan they thought something was wrong with his heart. So, from then on I had an ultrasound at every appointment. At 24 weeks, they told me I wasn’t going to have…

By Shyanne CeradskyMommy to Cecelia FayeAnencephalyJuly 19, 2022 My baby lived 39 precious weeks inside my womb, and just moments outside in the world, and her life still mattered. We went to a third-party ultrasound place to get some 3D photos done of Cecelia when I was 15 weeks pregnant. Almost immediately after starting the…

By Janell SchwarzMommy to Chanse SchwarzCongenital Diaphragmatic Hernia I found out I was pregnant at 13 weeks. I went in for a routine sonogram at 14 weeks with my OBGYN in Topeka, and I knew then I was having a BOY! This pregnancy was unexpected (I already had three living girls and I had a…

By Tara HahsMommy to HaleighCongenital Diaphragmatic Hernia and Bilateral Wilms Tumors Update: In early 2025, Haleigh finally got her kidney transplant! Haleigh was diagnosed with Congenital Diaphragmatic Hernia while I was pregnant at my 18-week scan. It was really emotional to get that news: A year before we lost a little boy to miscarriage at 17 weeks,…

By Emily VinsonMommy to WinnieTrisomy 18Born September 1, 2021 It all started when I had gotten my 10 week NIPT blood test done. It came back 96% positive for the rare genetic disorder, Trisomy18. When my doctor called, she explained that it was a rare disorder, and told me to “just google it.” When we…

By Katelyn LeeMommy to Harper MaeCHD – Truncus ArteriosusAugust 21 – October 17, 2022 (Scroll below to see the couple’s video story, as well as their update with their miracle rainbow baby born in 2024!)  My husband and I found out we were pregnant with our son in January of 2021. We spent January to May…

By Maggie ButtramMommy to ColeCongenital Heart Defect I remember every detail of what we thought would be our 19-week anatomy scan for our second child; it became a moment that is burned in my mind forever. My husband had to work, so I went alone, with my mom and oldest son in the waiting room.…

By Breanna ScottMommy to KendrickSpina Bifida Our journey with Spina Bifida began at my anatomy scan while pregnant with our first child, Kendrick, in 2017. My OB noticed some abnormalities on my ultrasound and sent me to a local maternal fetal medicine doctor. While there, I got another ultrasound and an amniocentesis. Both confirmed that our baby…