Recipient Stories

Tina CaudleMommy to TaeziaNeurofibromatosis type 1 (NF1) As a mom you know when something is wrong with your child. Taezia was born with a scary looking brown spot on the skin on her lower back. We asked her pediatrician about it at 8 months old. He sent us to Columbia and they did the genetic testing…

By Janet LopezMommy to GabrielGrade 3 Anaplastic Astrocytoma of ThalamusApril 8, 2016 – February 4, 2023 Gabriel was born the spring of 2016. He was a happy, healthy baby, and we were so happy to finally have him in our arms. He had all his regular newborn screenings, and we were discharged two days later.…

Tyra JohnsMommy to ElijahMalignant Rhabdoid Tumor Predisposition SyndromeFebruary 23 – May 20, 2022 I found out I was pregnant unexpectedly in June 2021, just 4 months after giving birth to Elijah’s older sister. Being only 21 at the time and a single mom of 2, I had many emotions but I knew there wasn’t anything…

By Becky HuffmanMommy to ShylaBorn December 2014Bronchial Pulmonary 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…

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 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, only to be told there was a 50% chance of…

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…