This benefit includes a poker run, a car show, raffle baskets, a silent auction, food and a 50/50 raffle. All proceeds collected during the event will go to the Meister family as well as a donation to the #LoveforLeighton mission to create awareness and help find a cure for Infantile Batten disease.
#LoveForLeighton was recently started this past April when Leighton Meister, a 2 year old, was diagnosed with Infantile Batten Disease, also known as CLN1, a terminal disease. Infantile Batten disease is very rare and is a recessive disorder that starts showing itself in normal otherwise healthy babies within the first year of life. Most infants lose developmental skills that they have learned such as walking, standing and speech. By the age of two most children will have epileptic seizures, lose their ability to see, and will be unable to feed themselves or communicate. Eventually, Infantile Batten Disease claims their lives in early childhood. When Leighton was diagnosed in April no one, friends and family, had ever heard of Infantile Batten Disease. Leighton’s parents want to raise awareness of the disease so other families are not completely blindsided. If you would like to know more about the #LoveforLeighton mission and Leighton’s story you can log on to Facebook and browse the #LoveforLeighton page.