Our daughter Avery is Eight years old. She is the sweetest, happiest girl you will ever meet. She smiles quickly and melts the heart of everyone she encounters. Her big sisters dote on her and her family loves her fiercely.

She also has CDKL5.

CDKL5 is a rare X-linked genetic disorder that results in early onset, difficult to control seizures, and severe neuro-developmental impairment. Most children affected by CDKL5 suffer from seizures that begin in the first few months of life. Avery started having seizures 3 weeks into life, cannot walk, talk, uses a feeding tube for her food and medications, and is confined to a wheelchair or other adaptive transportation devices.

At this time there is no treatment, and no cure. This is where we need your help, vital funds to conduct research for this rare disease.