CdLS Connections

Maria Watkins is a mother of five children, their middle child Ella was born with CdLS. Her and her husband live near Sioux City, Iowa, USA. They have a small farm, juggle work, a business, and their busy family and have recently started on their fitness journey. Maria shares Ella's early years and how a serious medical emergency helped her in finally accepting the diagnosis of CdLS. Maria shares the meaning of writing her blog in the early days and how circumstances moved her to entrepreneur...

Join us for a conversation with Dawn Seitz Rauscher as she shares her journey and her life with Nikki who passed away ten years ago at the age of 17. Nikki’s memory and legacy lives on in her family, community and the global CdLS Community. Send us a text Support the show Thanks for listening to CdLS Connections brought to you by the Canadian CdLS Foundation. Stay connected with our community at www.canadiancdlsfoundation.com and follow us on social media for more stories, support and ...

Join us for a webinar presented by Dr. Peggy Marcon M.D. and Kelsey Gallagher R.D. of Sick Kids Toronto at the US CdLS Virtual Conference in 2020 where you will learn about what is Blenderized Tube Feed diet, how to transition, findings from research and first hand parent experience. The quality of the audio is less than optimal due to the recording of a live virtual event. We recommend you download the slides to view along with the presentations here, or watch the webinar on our YouTube chan...

Ken Pfalzgraf and Tammi Ken Pzalfgraf is the father of Tammi who passed away suddenly at the age of 18 in late 2024.Ken started a channel called CdLS Dads to share Tammi’s life and his reflections and learnings as a father. Ken is also an avid guitar builder, tree expert and all around involved citizen in his community. We discuss everything from Tammi’s enthusiasm and connection to music, fatherhood, gastric duplicative cyst, seeing your child being dismissed, partnerships, the education sys...

A fellow CdLS dad, Gary sits down with Edgar to hear a father's perspective on having a child with Cornelia de Lange Syndrome (CdLS). Edgar, originally from Mexico, is the father of Daniel, a young boy with CdLS. Edgar shares his story of meeting his wife Ulzi, starting a family, moving across continents from Mongolia, back to Mexico and to Switzerland. He shares his journey with receiving the diagnosis, his role as a father and the challenges on accepting the diagnosis, the impact on their m...