The CdLS Blog

Parenting Special Needs Magazine : January/February 2025 Sometimes, no matter how prepared we think we are, it’s not enough. Use this guide to prepare for emergencies, and download the attached handy family safety checklist.  From factors like medical requirements and...

By Addison's Family Addie is a happy and energetic 3.5-year-old who loves swimming, riding her bike, and exploring new things. She attends a developmental preschool and is adored by her teachers and peers. She LOVES school and thrives in the school setting. Although...

By Elijah's Family Elijah is our five-year IVF miracle. At my 20-week anatomy scan, we received unexpected results, including a limb difference. Since we had tested all of our embryos and completed NIPT screening with normal results, our doctor was determined to find...

By Charles' Family Hello to all. I am Charles Jr, the father of CdLS warrior Charles III, aka C3. C3 was born 8 weeks early via emergency c-section in Tulsa, Oklahoma. In his first two months of life, he had various complications, but the major battle was with GERD....

By Jonas' Family Jonas, age 11, from upstate New York Jonas, was diagnosed with CdLS at age 9 after years of repeated medical, physical, and developmental differences led us to genetics. Testing confirmed a change in his SMC1A gene. In spite of it all, Jonas has...

The Cornelia de Lange Syndrome Foundation (CdLS) will participate in the Stop & Shop Community Bag Program starting in March. The Avon-based nonprofit Foundation will receive $1 for each $2.50 reusable community bag sold at the Simsbury grocery store during the...

By Shaun Heasley DisabilityScoop.com Several books are gaining accolades for their portrayal of the disability experience as part of a special set of awards handed out alongside the venerable Newbery and Caldecott Medals. The American Library Association announced...

By Lynne Azar parentingspecialneeds.mydigitalpublication.com Being a court-appointed guardian is a significant legal responsibility that carries immense weight.  It involves taking on the role of a surrogate parent or decision-maker for an individual who is unable to...

By Kathryn Wagner, mom to Molly There isn’t a day that goes by that I don’t think of my daughter Molly. She is everywhere around us. We still live in the house where she lived for most of her life. I can still hear her stomping around. I see the marks her wheelchair...