We’d like to introduce you to Grace. Funny. Mischievous. Joyful Grace. Words used by her parents, Jason and Karen, to describe the youngest member in their family of ten. 

At just six years old, Grace is the baby of the family, and loves spending time with her older brothers and sisters, the oldest being twenty-one. “She likes to sit on their lap, read books, and play outside with them. Grace also loves to play sports–baseball, basketball, pickleball, soccer, swim–and jump on the trampoline. Grace has such a happy disposition,” said her parents.

Grace entered this world on December 12, 2019, with a diagnosis of Down Syndrome. Down syndrome, often called Trisomy 21, is a genetic condition caused by an extra copy of chromosome 21, which changes how the body and brain develop. While Grace’s first few days were filled with uncertainty, it was just the prologue to her beautiful story.   

In our conversation, her parents explained, “After Grace was born, there were many unknowns. Grace was in the Neonatal Intensive Care Unit (NICU) for seven days due to concerns with her heart and issues with feeding. After she came home from the hospital, she had a feeding tube for six months so that was something we had to learn and adjust to. COVID ramped up a few months after Grace was born, so that made things extra challenging for everyone. Through it all, we learned to trust that God is always good and that He will guide us through all of the circumstances of life.”

With a diagnosis of Down Syndrome, developmental milestones, such as talking, are often delayed, which was one of Grace’s biggest challenges as she got older. 

“While she had learned around 200 signs in order to communicate with others, Grace was non-verbal as she entered the school system at age three. Learning to speak was difficult for her, but one of our biggest goals was having her learn to verbalize and be successful in Kindergarten.”

Thanks to a donation from Kenowa AMBUCS, whose goal is to stand shoulder-to-shoulder with others to make a difference, Grace was able to begin therapy at the Center for Childhood Development. 

“Grace’s therapy entailed teaching Grace how to speak–how to form words and where to put her tongue. The therapist also strengthened her muscles by doing mouth exercises, and taught those exercises to us so we could work with Grace at home, as well,” her parents said.

There have been many wins for Grace in her therapy journey. Her parents said, “In the beginning, it was learning to form words and speak individual words clear enough for others to understand. After that, Grace was able to learn how to string together words to form phrases and sentences.”

But therapy did more than just help Grace learn to form words and sentences. Grace was learning the importance of finding her voice and the power in verbally communicating with those around her.

Therapy gave Grace the opportunity to have a fantastic first year at school as a Kindergartner—a student that makes friends, loves her classmates and teachers, and enjoys recess, gym class, singing, and learning to read. Therapy gave Grace the confidence to speak effectively and clearly. Therapy allowed others to more fully see the gifts of Grace–the opportunity to know the sweet girl her family knows so well–that funny, mischievous, joyful Grace.

While Grace’s therapy is invaluable, the cost can be daunting. As her parents explained, “With eight children in our family and the current rise in inflation, we have a lot of increasing expenses. A couple of our kids needed braces, and Grace often has extra medical appointments. Grace’s therapy isn’t covered by insurance, so the therapy scholarship from Family Hope Foundation has helped Grace and our family so much!”  

Even in the midst of financial strain and busy schedules, they continue to move forward with hope, finding strength in their faith, their community, and Grace’s joy-filled spirit.

We often ask families what hope means to them. As a faith-filled family, Jason & Karen carry the hope that they can help by offering words of encouragement, serving others, and giving to those in need. They are also confident that the many gifts of Grace will continue to be a bright light in this world.