A Guide for New Families

A Guide for New Families

By: Family Services Whether the words “Cornelia de Lange Syndrome” are new to you or have been the focus of many hours of exploration/investigation/contemplation, we welcome you to our Foundation. However you choose to contact us — by phone, letter or email...
Meet Elijah!

Meet Elijah!

By: Sharonza P. Elijah may be smaller than other nine-year-old kids, but he is big in personality, energy, wit, kindness, and snacks. Elijah is a great help to his classmates at school. He is very observant and quite mischievous. He enjoys getting into anything and...
Meet Kalani!

Meet Kalani!

By: Gabriella, Kalani’s mom Kalani just turned 1 in July! We recently got his diagnosis in June. He has several GI issues, growth restrictions, and slightly delayed development. We are learning more and more about CdLS every day. We often contact the foundation,...
Meet Hani!

Meet Hani!

By: Nabeela I am so grateful to have this angel in my life. I cannot describe her in a few lines. She’s someone whom I never imagined existed in this world. Born on May 27, 2022, this little human couldn’t breathe for a couple of months. She was diagnosed...
Back to School Basics

Back to School Basics

By: Family Services With the new school year right around the corner, it’s time to prepare your child for the transition back to the classroom. Parents and children may feel both joy and dread about the academic year, but there are ways to make returning to...
A Guide For Grandparents and Extended Family

A Guide For Grandparents and Extended Family

By: Courageous Parents Network, Inc INTRODUCTION Being a Valued Support Grandparents and extended family members often find that the serious illness of a beloved child brings out their most well-intentioned impulses: to love, to support, to find ways to express...
Meet Paisley!

Meet Paisley!

By: Lillian Paisley Mei is four and is a bundle of inspiration and joy, and we could not be more grateful for her. She was in the hospital for the first 371 days of her life, where she endured many surgeries and treatments. She has been diagnosed with CdLS and...