Our son, Andrew, was born with Dandy-Walker Syndrome and has had to overcome many obstacles in his life because of this. Dandy–Walker Syndrome is the most common congenital malformation of the human cerebellum, affecting at least 1/10,000 live births. The condition involves the cerebellum (an area at the back of the brain that controls movement) and the fluid filled spaces around it. From the moment he was born, we had so many unanswered questions and worries. The syndrome can appear dramatically or develop unnoticed. Symptoms, which often occur in early infancy, include slow motor development and progressive enlargement of the skull. 

Andrew has been incredibly fortunate in that his is a mild case of Dandy–Walker. However, he has still had numerous medical challenges since birth such as torticollis, reflux, strabismus, inner ear challenges, dental procedures, speech issues, and most of all gross and fine motor issues, all of which are the result of having Dandy-Walker. Andrew has seen many doctors over the years and has undergone several procedures and surgeries. I have held his hand many times as he fell asleep under anesthesia - he was always so brave, not knowing it was he who was actually holding my hand.

Starting at six months old, Andrew was fortunate to receive about 25 hours of in-home therapy through our state's Birth to Three organization. He had OT, PT, speech, and floor time, which continued into preschool and elementary school. Andrew worked so hard in therapy, always giving 100% and never complaining. His sweet demeanor won everyone over, and I can't tell you how many teachers, doctors, and therapists through the years have expressed how amazing he is; often with tears of joy in their eyes. 

From playing with the neighborhood kids, to gym class and organized sports, Andrew has never backed away from doing anything we have introduced him to. Even though he wasn't the fastest in the group or on the team, he just kept going and never gave up. He has learned to swim, bike, and run, among many other activities, and now he even rows, which is an arduous and challenging sport for him. 

Andrew is now a sophomore in high school, and he recently received the Student of the Month Award at his school for "exemplifying the ideals that are desired to be seen in each high school student and being an exceptional role model for other students." As his parents, we are in awe of his perseverance and determination. We are so excited for his future and can't wait to see all that he accomplishes in his life.

The Dandy-Walker Alliance, Inc. is a 501(c)(3) nonprofit organization registered in the State of Maryland.  All contributions are tax-deductible to the extent permitted by law.  

This page is secured by 256-bit encryption.