Two-year-old Sadie who was diagnosed over a year ago with CDKL5.  Photo courtesy of the Laflamme family. Submitted photo

Two-year-old Sadie who was diagnosed over a year ago with CDKL5. Photo courtesy of the Laflamme family. Submitted photo

BOSTON – Senator Michael O. Moore (D-Millbury) recently sat down at a local coffee shop to meet with Amanda Laflamme of Grafton and her two-year-old daughter, Sadie, who was diagnosed with a cyclin-dependent kinase-like 5 or “CDKL5” disorder.

After experiencing multiple health complications early in life, Sadie underwent numerous medical tests which confirmed that one of her genes on the X-chromosome has a mutation. CDKL5 is a rare genetic disorder that results in early onset, difficult to control seizures, and severe neuro-developmental impairment.

“I am very happy Senator Moore took the time to meet with Sadie and me,” said Amanda Laflamme. “With our 2nd Annual Ride for Sadie event on the horizon, we are trying to raise awareness of CDKL5 by spreading the word across our community.”

“I am certainly impressed by Sadie’s strength and resilience, and the outpouring of support from family, friends and local residents,” said Sen. Moore. “While CDKL5 may not make the headlines, it is clear to me to that additional research and awareness would help benefit those who are diagnosed.”

The 2nd Annual Ride for Sadie motorcycle fundraiser will be held on Saturday, September 19th at the Scandinavian Athletic Club (SAC) Park located in Amanda’s hometown of Shrewsbury. Registration is open from 10:00 AM until 11:30 AM and the ride will leave at noon. Tickets are $15 per person and there will be music, food and raffles. For more information, please visit, the EventBrite Page.