Meet our volunteers

Our names are Ryan and Lauren Linton.

We are excited to be Tennessee Regional Coordinators and share any information we have learned from our experiences, from doctors, and the CdLS Foundation.

Navigating all the physical, emotional, and educational challenges accompanying this journey can feel isolating and complex, and we want to help however we can.

We live in Nolensville, TN (a little south of Nashville). We have six children, ages 2 to 15. Our 8-year-old daughter, Savlyn, was diagnosed with Cornelia de Lange Syndrome through genetic testing before her first birthday.

From ultrasounds during pregnancy, we knew that something was likely going on due to Savlyn’s small size and other genetic markers. However, we did not have a clear diagnosis until genetic testing came back with a mutation on the NIPBL gene. Even before we knew her exact diagnosis, she received several early intervention therapies (PT, OT, Feeding) and many specialists (Genetics, GI, ENT, Audiology, Urology, and Cardiology).

We are incredibly fortunate to live near Nashville and Vanderbilt Children’s Hospital. Although CdLS is rare, Savlyn has some doctors and therapists who are somewhat familiar with it.

With help from the CdLS Foundation’s resources, they have made informed decisions and recommendations for her care.

The early intervention therapies that Savlyn received and continues to receive have made an enormous difference in her development.

We didn’t know if she would ever walk, talk, self-feed, or what her cognitive development would look like. It was scary and overwhelming, but we had a wonderful support system of family, doctors, therapists, and information from the CdLS Foundation that helped make things more manageable.

Savlyn still has many challenges, but she is relatively healthy and verbal, eats independently, runs, and loves riding the bus and going to school!