Who is Lily?
Lily has a smile that is infectious. It’s big and bright and
totally pure. Her laugh is amazing. She makes the people
around her smile and laugh with her. Lily has red hair, big
blue eyes, and skin so pale she is practically translucent.
She looks like an angel, and she is. Lily has Angelman
Angelman Syndrome (or AS) is a neurodevelopmental
disorder affecting approximately 1 in 15,000 births. Lily
was diagnosed with Angelman Syndrome at ten months
old. She was diagnosed through genetic testing, after
visiting multiple doctors because of reflux; physical
therapists because of unmet milestones; and a general
feeling of “something just isn’t right”.
The smiles on the faces of individuals with Angelman
syndrome (AS) belie a life marked by severe
developmental delay, speech difficulties, seizure disorders
and more. And yet, they go on smiling.
A cure for this disorder has been found in mice, and Lily
has been chosen as 1 of 24 Angels to participate in the
Minocycline Human Clinical Trial in Tampa, Florida! This
is great news and could be life changing for her and all the
other Angels out there! Please consider helping Lily's
family to get her to Tampa!
|Help Lily's parents get her to Tampa
|Run for Lily 5K – Sponsor a Cure Run and 1 Mile