The Butler Trail is special to our family because it’s our five-year-old son, Simon’s, happy place. We live across the street from trail access and have been strolling the trail together almost daily ever since he was born. Simon likes observing people running, biking, and walking their dogs as well as spotting the decorative belts along the boardwalk. Most of all, Simon loves all the bridges! He experiences such joy walking and running on them.

But, every time we watch him walk and run, we can’t help, but get choked up knowing that he will soon lose his ability to walk and run if a timely cure for Sanfilippo Syndrome, a fatal, neurodegenerative condition, isn’t found. He’ll soon progressively lose his abilities to walk, talk, and eat, and pass away as a child, or teenager, at best. We can only imagine his sadness, confusion, and frustration that result over the loss of these abilities. It brings to us to tears.

So, we recently started a http://www.HelpSimon.com campaign with the hopes of changing Simon’s fate…to keep him walking and running on the trail for decades to come. Please watch our three-minute video, donate if you can, and share our video with as many people in as many ways as possible. We ask for the help of our trail-loving community to share our story far and wide.

If you see us on the trail, please wave and say hello! After watching the video, you won’t miss us. Simon will likely be holding his stuffed monkey and receiving looks of melted-hearts from folks passing by.

With gratitude and love,

Alina Gorniak (mom) and Jeremy Croke (dad)