The CdLS Blog

By Shaun Heasley  DisabilityScoop.com A new theme park is prioritizing the needs of children with disabilities as it opens its doors for the first time. The Peppa Pig Theme Park near Dallas opened over the weekend complete with a host of accessibility features. All...

By CdLS Foundation Clinical Advisory Board (CAB) Our seven-year-old son needs to have a cavity filled but is very uncooperative at the dentist’s office. Is there any anesthesia that would help him out? I don’t like putting him through such a traumatic thing and I hate...

On Saturday, January 25, 2025, Michelle Gentry, and her family hosted the final rodeo in a five-event “Bulls and Barrels” series to raise funds and awareness for the Cornelia de Lange Syndrome (CdLS) Foundation. CdLS is a rare genetic spectrum disorder that causes a...

By The National Organization for Rare Disorders (NORD) https://rarediseases.org/ Think of 10 people you work with, 10 people you went to school with, or even 10 of your social media followers. Now, consider this: statistically, one in every 10 Americans is living with...

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...