The CdLS Blog

By Mariel Moody Anthony is a 2-year-old sweetheart who goes by the name Ife. Ife (Ee-Fay) means LOVE in the Yoruba language, and he lives up to his name. He was born in September of 2021 and weighed only 4.9lbs. He is tiny but mighty, with a huge personality that he...

By Leslie Schilling, Mother to Aubrie Aubrie Adelaide Schilling was born on September 24, 2021. She was born with a head full of hair and was an adventurous girl from the beginning! I am her mama, Leslie, and her dad is Ryan. She adores her sister Zoey, who is 14...

Dear Friends, Over the past few years, the CdLS Foundation staff has collaborated with our families and board of directors to re-imagine the CdLS Foundation National Family Conference. Our previous National Conference model was no longer sustainable because many...

The CdLS Foundation and community have had the privilege of having Dr. Carol Potter as part of our family for over 20 years. Her insight, knowledge, and compassion have enhanced our mission of ensuring individuals living with CdLS and their families are cared for and...

Dawn and Rolfe Rauscher Every journey through the world of CdLS is different. Unfortunately, some journeys are shorter than others. When an individual's life with CdLS ends, their families often continue to lean on the Foundation for support services and guidance. In...

Fermina Lopez My transition to adult care has been a long process. In my early teens, my doctors and I started discussing how it would look when I transitioned to adult care. I had a primary care doctor and an OB/GYN during my teens. My doctors explained how health...

Tim Luce and Miguel Avila Tim’s Story … Sam, my son, was born on October 19, 1987. When Sam was young, I called and followed all the children I could find who were mildly affected. I wanted hope and was trying to see what our life would be like with Sam. We were...

Rachel Busch Rachel was born in May of 1985 to Maryanne and Doug and has been part of the CdLS Foundation since 1999. She currently lives with a roommate in Michigan. Rachel is a force to be reckoned with for those who don't know her story. She is someone who has...

By Cassandra Brown Ezra was born on the first day of “Heart Week” on February 7, 2020. He is such a happy-go-lucky kid, always laughing and smiling. He lights up any environment and is always friendly and outgoing. Ezra was diagnosed when he was 11 days old with the...