*The Shenal family – Stephen, Jodi, Tyler, and Ryleigh – started Race the Helix in 2011 to provide support, awareness, and hope for other families impacted by genetic disorders. See more of their story below.
From the moment that GGC became a part of our story, we knew that we were in great hands.
Shortly before our daughter’s birth, abnormal ultrasound scans led to a need for genetic testing. As a lethal genetic disorder was presumed, we leaned on investigative assessments that we never imagined needing. Thankfully, GGC’s cutting-edge technology ruled out our worst fears.
It gave us HOPE.
Those results from our initial genetic testing put breath back into our lungs. We knew that our unborn baby had a shot at life, and we were immensely grateful.
When Dr. Steve Skinner visited our tiny newborn in the NICU, and came to see us in my hospital room, we sensed his compassion. With his careful observations of Ryleigh, and detailed head-to-toe evaluation of her, we felt assured that the best professional had been placed in our path.
After our NICU stay ended, our results from more comprehensive genetic testing came in. As Dr. Skinner delivered the news of a definitive, rare genetic disorder diagnosis to a devastated mother, I felt kindness in his gentle tone. While the world was turning upside down, he was not only scientific, but also very warm and empathetic. He reminded me that Ryleigh was still the same beautiful baby that she was before we spoke. Our difficult phone conversation was far from cold and clinical.
At our very first meeting at GGC, we were equipped with knowledge, resources and a caring team of individuals. We received stellar care for Ryleigh, and a solid care plan. We underwent valuable genetic counseling. We knew that with Dr. Skinner’s expertise and GGC’s early intervention on our side, we wouldn’t face this journey alone.
We’ve never felt alone.
Almost fifteen years into navigating a world of parenting a child with a rare genetic disorder, our gratitude has only grown. Our beautiful daughter is happy and THRIVING!
We’re forever grateful for all the behind-the-scenes work that happens at GGC.
We’re forever grateful for Ryleigh’s outstanding doctor. The generous time that Dr. Skinner has spent caring for Ryleigh in the clinic and educating our family has had such a positive impact. He’s also one of her most favorite people, as she consistently lights up every time she sees him!
We see the vital importance of genetic research and accessibility to comprehensive genetic testing for families. We were provided with timely answers that led to our ability to take a proactive approach. Even though her diagnosis was rare and there would be many unknowns to come, we were able to secure the best supports, like Nephrology, Cardiology and Neurology specialists. We began early Occupational and Physical Therapies to give her the best start. Ryleigh was such a resilient baby, and she inspired resilience in us. With a specialized team on board, we could ensure the best quality of life for her.
We want to continue to bring awareness and support to families like ours.
We never want any family to ever feel alone.
We’ve been a GGC grateful family since 2010, and we always will be!