Celebrations this holiday season will be very different for the Villaseñor family. As parents of a child with mitochondrial disease, Faustino ‘Tino’ and Kristin Villaseñor will share the joy and warmth of the season with family and friends, but they will visit online or safely separated by their living room window. This year, keeping their daughter, Lily, healthy is the best gift they can give her. “I think a lot of people see Lily and say, ‘oh, she looks fine’,” Kristin said. “But, we want to protect her and keep her well.”
The Villaseñors’ journey with mitochondrial disease began in 2015. Tino and Kristin were excited to learn they were expecting twin girls. After months of planning, the due date arrived. The Lombard, IL, couple were thrilled and felt incredibly blessed. While both girls were full term at birth, Lily was two pounds smaller than her sister, Addy. When the girls were four months old, Kristin and Tino noticed Lily’s eye was different. They brought their concerns to their pediatrician. “Lily wasn’t making eye contact. She would only follow objects,” Kristen said. Initially, doctors wanted to rule out autism. More tests were ordered. Neurologists scheduled MRI’s, additional tests and physical therapy. Lily’s eye function returned to normal on its own. Her doctors focused their attention on ruling out other conditions, including cerebral palsy. Genetic testing showed that Kristin and Tino each carried a mutation that would provide some answers and lead to a diagnosis.
Lily was diagnosed with a form of mitochondrial disease known as FARS2. The Villaseñors received the diagnosis for Lily a week before the couple’s third daughter, Ariella, was born. They tried to focus on the upcoming birth, but they were also emotional and scared for Lily.
Like many parents of newly diagnosed children, the Villaseñors discovered a network of support and information through the United Mitochondrial Disease Foundation. An “Ask the Mito Doc” video interview led the couple to find a medical team for Lily. Their participation in the Chicago Energy for Life Walkathon gave them the platform to share with friends and family the challenges Lily faces with her illness.
While this holiday season will be different, the Villaseñors remain hopeful and grateful. They are thankful that Lily’s symptoms are being managed, and she is doing well. They are excited that she gets to attend virtual pre-school with her sister. Tino is teaching his daughters how to play baseball and is proud of Lily’s ability to hit far from her wheelchair. They are grateful for the support and resources they have found through the UMDF.
“Our doctor tells us great advances have been made in the field of mitochondrial medicine in the past five to ten years,” Tino said.
“Our hope is that research and science will provide a treatment for everyone with mitochondrial disease or develop therapeutics that can stop the progression. Most of all, we hope for a cure for everyone soon.”
–Kristin Villaseñor – Mito Mom