The CdLS Blog
Meet Lindsey
By Lindsey's Family Our journey with Lindsey, who was diagnosed with Cornelia de Lange Syndrome (CdLS)NIPBL mutation, has been filled with challenges, triumphs, and invaluable lessons. From medical hurdles like feeding struggles, hearing loss, and seizures to...
Meet Oliver
By Oliver's Family Oliver is an incredible 8-year-old boy who was diagnosed with CdLS (missense NIPBL mutation) when he was 9-months-old. Ollie has secondary diagnoses of central auditory processing disorder and epilepsy - but thankfully his seizures have been under...
Lego Increases Disability Inclusion In Its Product Line
By Shaun Heasley disabilityscoop.com Lego is introducing new characters outfitted with an internationally recognized lanyard designed to quietly indicate that a person has a hidden disability and might need some extra support. The company said this month that it is...
Meet Gunner
By Gunner's Family Gunner was born January 9, 2021, a month early. He was in NICU for 3 ½ months and he was diagnosed with CdLS, and our life was forever changed. Gunner is now 3 ½ years old and he is feed by feeding tube. Gunner does not walk but he just started to...
Meet Sydney
By Sydney's Family Sydney is currently 14 years old and in 8th grade. She loves going on airplanes, staying at hotels and Airbnbs. She was really excited for this trip. She loves doing gymnastics, swimming, and jumping on the trampoline. She adores her sister and...
Sports Adapted to Your Child’s Abilities
By PSN Team parentingspecialneeds.org Did you know that there are over 8,000 different sports in this world? Yes, 8,000! There are physical sports, mind sports, board sports, equestrian sports, the list goes on. There is even a sport called “Wifecarrying” if you can...
Meet Mikayla
By Mikayla's Family Mikayla was a Special Olympics gold medal winner in 8th grade at the Illinois State Games. She loves music from classical to country and everything in between. Her favorite food is sushi. You will always find her wearing red nail polish. She LOVES...
You Asked, We Answered: What communication devices should we consider?
By CdLS Foundation Clinical Advisory Board (CAB) Speech (and communication device) What should the speech therapist be doing to help my 2 ½-year-old daughter start talking? My daughter has been seeing a speech therapist since birth. We would like to know if the...
You Asked, We Answered: What should we do about sleep issues?
By CdLS Foundation Clinical Advisory Board (CAB) Sleep Difficulties Mother reports irregular sleep patterns and states that son only has restful sleep when he has taken his Tegretol (it knocks him out). What are your thoughts of cause or suggestions of treatment? If...
You Asked, We Answered: Dealing with Teen Mood Swings
By CdLS Foundation Clinical Advisory Board (CAB) Mood Swings My teenage daughter is very high functioning; however, the older she gets, the more rigid and unwilling to accept changes in daily routines she becomes. She will cry uncontrollably, or become reclusive until...
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