News + Updates

Below is an excerpt from the dedication of the manuals. Bring these manuals with you to your Dr. appointments, share them with your medical teams. Please come back and comment if you feel something is missing. We are currently working on Edition 2 of the Manuals with updated research. Dedication from the 2021 CS Manuals: To all of the parents around the world who have walked this path daily, shedding light and working so feverishly to get information as well as support and

Ryan Peter Spagnoletti Ryan Peter Spagnoletti was born on 13 June 2003 in Cape town south Africa. He arrived at 33 weeks and spent 3 weeks in hospital and weighed 1,6 kgs. He was such a happy little boy who loved to be around adult company. Some say he had a wise soul. Despite that old soul, he was a typical boy; he loved sports and being mischievous. He also loved riding his bike and his horse. Ryan especially loved horseback riding especially when they trotted and went

Ben is a happy and curious 7-year-old boy with the severe form of Cockayne Syndrome. He is fearless and loves to explore and make new friends. Ben always likes to be helpful and is a brave little man who will rush to defend a person in need. He loves to cuddle and explore the outdoors.

Medical Advisory Committee

Board Member

Medical Advisory Committee

Medical Advisory Committee

Medical Advisory Committee

Board Member

Board Member

Medical Advisory Committee

Medical Advisory Committee

Medical Advisory Committee

Board Member

Family sitting in front of holiday decor

Chase at just two years old is the baby of the bunch but he rules the house with his smile and sass. He loves playing with his older brothers and is bound and determined to keep up. He is very determined and will not give up on getting what he wants. His memory is excellent and he knows landmarks around town, screaming for us to look as he points. His smile will light up any room and it brightens our family’s life.

Zion is the most fun loving six year old you will ever meet.

Meet Harper who was 10 years old and was diagnosed with CS in December 2021.

I would love to share little Olive Mae!! I’ve attached some pictures but let me know if they don’t work or you want something else! Meet Olive Mae Marquez, one of the spunkiest, fiercest, and happiest 5-year-olds around. Olive has type 1 Cockayne syndrome, which has affected her in many different ways. But one thing is for sure: she’s been working on overcoming them all! She loves to care for her baby brother Eli (and her many babies), pretend play doctor or kitchen, kick t