Meet Rachael

Meet Rachael

By Rachael’s Family This is Rachael, she will be turning thirty-two in May. She has overcome so many obstacles but lives everyday to the fullest. Her older sister, who is an RN and has worked in the Emergency Room for many years, asked if she could take over the...
Meet Kathleen

Meet Kathleen

By Kathleen’s Family Meet Kathleen — our sweet and spirited four-year-old! She’s a very special girl with an HDAC8 variant, and every day she amazes us with her strength and joy. Kathleen loves going to school, especially her wonderful program for children who...
You Asked, We Answered: Seizure concerns

You Asked, We Answered: Seizure concerns

By CdLS Foundation Clinical Advisory Board (CAB) Can you please respond to these concerns and the course that the treatment and evaluation should take? Is it unusual for seizures to develop at this age? Do most children with CdLS manifest them earlier in life? Our son...
Sibling Story

Sibling Story

By Natalie, Kalani’s sibling What do you feel is the coolest thing about your sister/brother? Kalanis is such a special little guy. He’s small and super cute, and he always does his own thing without worrying about what anyone else thinks. He’s really good at...
Sibling Story

Sibling Story

By Maya, Sienna’s sibling What do you feel is the coolest thing about your sister/brother? The coolest thing about my little sister, Siena, is that she has the best memory. Siena will remember the tiniest details of an event so long, like it was yesterday. Her...