Keila’s Journey: Embracing Life with Trisomy 13

Keila is an extraordinary young woman who was diagnosed with Trisomy 13 during infancy. While I suspect she has the mosaic form of the condition, much of her medical history remains unclear to me. Keila is my boyfriend’s daughter, and being a part of her life has been both a learning experience and a privilege.

Keila is partially deaf and communicates using speech-assisted signing, a skill that highlights her determination to connect with others. She also had a cleft palate repaired earlier in life and experienced grand mal seizures during her childhood, which thankfully subsided as she entered her teenage years.

Though I don’t know all the specifics of her diagnosis, my limited research into Trisomy 13—also known as Patau Syndrome—has revealed some traits that resonate with what I see in Keila. Despite the challenges she has faced, Keila continues to shine.

In 2022, Keila celebrated a major milestone: she graduated from high school! Her dad and I are now exploring programs that can help her find a job and build her independence. Keila has a knack for organization and enjoys tasks like folding clothes and putting away groceries. She takes pride in her work and brings a sense of order to everything she does.

Of course, caring for Keila comes with its challenges. Her temper tantrums and difficulty accepting “no” can be tough to navigate, especially when explaining certain situations proves frustrating for her dad. However, Keila’s bright personality and ability to charm those around her make it all worthwhile. People love working with her because she radiates positivity and determination.

Keila’s journey is a reminder that even with life’s hurdles, perseverance and a strong support system can lead to incredible accomplishments. She continues to inspire us every day with her resilience, her vibrant spirit, and her ability to light up the lives of everyone she meets. We are excited to see what the future holds for her as she takes on new challenges and opportunities.

Written by Keila’s mom