Information and Advice

Information and Advice

Not all health professionals are knowledgeable about CdLS. Sometimes you must do your own research. Our grandparents found these resources most helpful: 

“As his symptoms were being identified, I went to the library in search of medical reference books. The parents searched on line. Once CdLS was mentioned, my daughter contacted the Foundation and talked to other parents.”

“I came home shortly after her birth and haunted the local hospital library. I checked out state institutions in the event that that became an option.”

“Advice and information came mostly from the parents with all the research they were doing on CdLS. The strength these parents had for their child and their family was just so powerful.”

“The CdLS Foundation is a tremendous support system for our family. I have seen my children go from ‘Where do we go from here?’ to ‘Wow! There is something out there for us!’” 

“Actually my daughter did the research. I have learned from my daughter and her husband. But most of all, I think I learned from my granddaughter herself.”

“I contacted the CdLS Foundation two months after he was born and received the information right away but it sat unopened on my desk for an entire month. I did not want to see it or see pictures of any children that were affected by the syndrome. I was fearful that our grandson would show many of the same symptoms.”