Lilah

USA

Lilah was diagnosed with DESSH in October of 2022 following a whole exome sequencing test, after about a year of searching for a diagnosis. Some of the conditions that Lilah struggles with are hypotonia, developmental and speech delays, GERD, sensory issues, behavioral issues, frequent ear and respiratory infections, and sleep disturbances (including night terrors). She currently receives weekly physical therapy, speech therapy, and specialized skills therapy. To help her ankle overpronation, she wears SMO ankle braces.

Lilah has made such great progress since starting her therapies. She is now walking everywhere. She is figuring out how to use sign language to communicate with her family while she works on her speech. She regularly visits several specialists including a geneticist, neurologist, ophthalmologist, otolaryngologist (ENT), orthopedic specialist, and she is waiting to see a developmental pediatrician.

Lilah is such a happy little soul and loves to make everyone laugh. Some of her favorite things are music and dancing, snuggling her cats and dog, snacking, playing with her older brother, and signing along to The Wheels on the Bus song.