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Lylah's Story

Siskin Children’s Institute has really made a huge impact on our lives! They listen, they take time to evaluate my child, and never give up. The therapists are amazing. They educate me as much as possible and listen to my concerns and are very supportive. I cannot tell you where we would be today if Lylah had not begun to receive the services she gets today.“

-Hannah, Lylah’s mom


Lylah was born full term, but after not being able to maintain her own body temperature, she was taken to the NICU where she briefly stopped breathing and it was discovered that her platelet counts were extremely low. She struggled with feeding, had severe acid reflux, and had trouble sleeping. As Lylah began to reach her first birthday, she was behind in meeting developmental milestones such as eye contact, communication skills, and movement. Her pediatrician knew it was time to refer Lylah to the Siskin Center for Developmental Pediatrics for an evaluation. 

As Lylah and her mom began the evaluation process by the Institute’s interdisciplinary team, they also sought out genetic testing to help provide a full picture of Lylah’s health. Soon after her evaluation, Lylah was diagnosed with Autism Spectrum Disorder, a sleep disorder, mixed receptive language disorder, sensory integration disorder, and delayed milestones. Genetic testing also revealed that Lylah had an extremely rare neurological genetic condition called Med17. She is one of 11 diagnosed cases. Lylah’s family finally has answers and a plan to move forward. Lylah began occupational, physical, and speech therapy at the center and began working towards her goals. She has learned how to play, has overcome most of her sensory and texture aversions, and is using hand gestures and making eye contact more often as she continues to work on communicating with her peers and adults. She is strong and continues to develop skills and strength as she works to meet her new milestones and goals.