Grafton Family Organizing 'Ride For Sadie' To Benefit Young Girl With Rare Disorder

GRAFTON (CBS) – Amanda Laflamme knows a cure for her daughter Sadie's rare neurological disorder isn't yet on the horizon. But she also knows the path to awareness has to start somewhere.

Amanda and her family have organized a motorcycle fundraiser called Ride For Sadie, scheduled for Sunday in Lunenburg and North Grafton.

The fundraiser is intended to raise money and awareness for CDKL5, which is an extremely rare neurological disorder that impacts just 800 people worldwide.

With the disorder, 16-month-old Sadie has about 200 seizures per day, has developmental delays, visual impairment and little to no speech.

The motorcycle benefit begins with registration from 9 a.m. to 11 a.m., and motorcycles leave from 96 Lakefront Ave. in Lunenburg. The ride ends at Post Office Pub on Ray Street in North Grafton, where a party featuring music and raffles will take place.

Amanda said this is the first fundraiser she has held for her daughter, and added that she hopes it is the beginning of the efforts to raise awareness for CDKL5.

"We hope that eventually there will be some way of helping them succeed in life. Whether it's she's able to eat table food by mouth forever, or if she could take three steps," Amanda said.

For more on the Ride for Sadie, visit the event's Facebook page.

WBZ NewsRadio 1030's Karen Twomey reports

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