Kaylee Ashlyn Culvahouse

Our precious daughter, Kaylee Ashlyn Culvahouse, passed away on March 20, 2024 at 6:34 pm. She was 15 years and 8 months old. Kaylee is survived by her parents Beau and Sherry Culvahouse, siblings Allison and Colton Culvahouse, maternal grandparents Bruce and Akiko Johnson, paternal grandmother and step grandfather Jim and Terri Philomeno, paternal grandfather Harvey and step grandmother Maritza Culvahouse along with several aunts, uncles and cousins.

Kaylee will always be our beautiful and courageous earth angel, master teacher, our miracle. In her short life, Kaylee taught us more than we could have ever imagined possible for a child. She was wise. She was silly. She was true to herself, and she showed us how to be brave. Though devastated, we know we are so fortunate to have been able to give Kaylee so much, to have seen her so joyful, and to have experienced so much life with her. We are filled with gratitude for that time and the many people who came into Kaylee’s life to help us give her the world.

Kaylee was born on July 23, 2008, at Christus Spohn South Hospital in Corpus Christi. She made her entrance with a small deletion on her 1st chromosome, and so began our family’s walk with 1p36 Deletion Syndrome. Despite a small deletion, 98 genes precisely, Kaylee provided our family with multitude of blessings, trials, and lessons. Though her first few months were calm, at 5 months old she started having seizures that progressed to infantile spasms. It started our special needs journey and led to our official diagnosis of 1p36 Deletion Syndrome at 6 months old. 1p36 Deletion Syndrome is a genetic condition in which a small amount of genetic material is missing at the tip of the short arm of chromosome 1. 1p36 Deletion Syndrome causes birth defects, varying degrees of intellectual disabilities, and minor changes in physical appearance.

Despite Kaylee’s many challenges, she was determined to never let 1p36 Deletion Syndrome define her. We drew strength from Kaylee. She taught us acceptance. She reminded us that life doesn't stop with a heartbreaking diagnosis. She showed us there is always a way to tackle the seemingly impossible, to embrace the present, cherish the simplest of gifts along the way, and wake up joyful each day ready to take on new adventures.

Seeing Kaylee’s eyes light up and her hearing her sweet laughter pressed us forward. Kaylee was always ready for an adventure like taking simple walks, swimming in the ocean, riding her bike in our neighborhood, skiing on advanced ski runs in Ruidoso, inner tubing, boating, jet skiing, cruises on our golf cart, roller coaster rides, roller skating, excitedly completing several 5k races with her parents and Wings of Texas friends, hiking, boating, and numerous family vacations all over the United States.

Throughout our journey we have witnessed incredible kindness and generosity in our community and beyond, especially her doctors, therapists, service providers, 1p36 family and friends. Some fell in love with our beautiful girl and became part of our family, helping care for Kaylee on a deep, personal level. Others were complete strangers, selflessly helping to give Kaylee a big life. Kaylee seemed to always bring out the best in people.

Without a doubt, Kaylee loved attending Flour Bluff School. She soared through all the grades and just excelled and thrived. The Flour Bluff community fully embraced our sweet girl and provided an environment where Kaylee could be her true self. They saw Kaylee for Kaylee. For what she could do, not for her challenges, but for the silly, smart, incredible person she was. They always respected Kaylee and allowed her to guide them.

Kaylee passed suddenly and peacefully surrounded by love. In true Kaylee fashion, even her death was on her terms. We are truly honored she picked us to be her parents. Although we will miss her terribly every day, especially her belly laughter, she will forever remain in our hearts. Kaylee’s journey is not over. It has only just begun in this lifetime and there after.

A public memorial celebration of Kaylee’s life will be held on Thursday, March 28, 2024 at First United Methodist Church located at 900 S Shoreline Blvd in Corpus Christi, TX. The viewing will be from 3:00-4:00 pm with the service to follow from 4:00- 5:30 pm. A gathering will be held following the service in the Fellowship Hall.  Please wear bright vibrant clothing instead of black as that was our Kaylee…..bright, happy and full of life.

In lieu of flowers, we ask that you make a tax-deductible donation to the 1p36 Deletion Support and Awareness (1p36dsa.org). For donations using a check or money order, please send it to:

1p36 Deletion Support & Awareness

ATTN: Karen Bess

48 Cornfield lane

Warwick, NY 10990

To send flowers to the family, please visit our floral store.