Imagine the symptoms of Cerebral Palsy, Parkinson’s, Epilepsy and Anxiety Disorder… all in one little girl.

In January 2014, shortly before she turned three, Lily was diagnosed with Rett Syndrome. This is a disorder that happens spontaneously, randomly, and to people on all walks of life. Every 90 minutes a girl is born with Rett Syndrome.

Rett syndrome is a genetic neurological disorder occurring almost exclusively in females and becoming apparent after 6-18 months of early normal development. The resulting regression leads to lifelong impairments, including lost speech, seizures, scoliosis, irregular breathing patterns, and more than half of the children and women lose the ability to walk. Those diagnosed with Rett Syndrome require maximum assistance with basic daily activities.

Despite the debilitating nature of the disorder, Lily is so much more than a laundry list of symptoms. Her beauty and strength inspire and motivate everyone she meets.

And a cure is on the horizon. Rett Syndrome stands apart from other neurological disorders due to the dramatic reversibility of symptoms in animal models.

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