Rory's Ride

Rory Hayward may be one of the happiest six year olds that you will ever meet. With a smile that can light up a room, anyone who has met Rory can see just how special he truly is. Aside from his million-dollar smile, Rory is unique for another reason; he suffers from the rare chromosomal disorder, STXBP1. This is an extremely rare condition that has only been studied within the last decade.

Rory’s diagnosis came after multiple hospitalizations and dozens of invasive tests. Throughout his short life, Rory has had multiple diagnoses and various forms of treatment.  It was not until he was four years old that doctors were able to conduct the necessary genetic tests to determine that Rory’s 9th chromosome was mutated, leading to the diagnosis of STXBP1. Some of the characteristics of this disease include the inability to walk, talk, or control large motor function.


Rory has kind and loving parents, Darcie and Greg, who love Rory more than life itself. Both Darcie and Greg do everything they possibly can to ensure that Rory leads a normal life, full of happiness and love.  As Rory gets older and continues to grow, transporting Rory becomes more and more difficult. Darcie herself suffers from Rheumatoid Arthritis, which can increase the level of difficulty in carrying and transporting Rory through everyday life.
While they have done the best they can to manage the financial demands, the cost of a handicap-equipped van will be burdensome and create a hardship for the family.   Through this campaign, we hope to raise $25,000 in order to help Darcie and Greg alleviate some of this burden. This van would greatly aid both parents in their ability to transport Rory, and ensure that he is able to continue day-to-day activities like any other kid. 
Your generous contribution, no matter how big or small, is greatly appreciated.  Please share this with others that would be interested in helping this family out.