Tia is a 13-year old girl diagnosed with CDKL5 disorder. She lives with her parents and 10-year old sister Emma in Toronto. This March Tia reentered the school system after being homeschooled since the age of five. CDKL5 disorder affected Tia to the extent since age five that she was unable to attend regular school because of multiple hospital admissions ranging from status epilepticus to metabolic issues. Luckily today her health is good and she is able to attend school which she thoroughly enjoys.
CDKL5 is a rare x-linked neurodevelopmental disorder. Most individuals with this disorder are affected with early-onset difficult to control seizures. Many have gait abnormalities and are unable to walk. The Tia Staley Walk for CDKL5 Research is a walk of HOPE, Tia will lead this 1K fun walk in honor of all children affected by CDKL5 disorder.
All proceeds from this event will go to CDKL5 Canada.
Contact Sangeeta Staley at firstname.lastname@example.org to obtain:
9:00 am - Registration
9:50 am - Pre-Walk Briefing
10:00 am - Walk starts