Since the completion of his new playground last week, eight-year-old Ethan Chang has been able to play in his backyard on his own for the first time in his life.
"I think that's the best thing about it," said Anne Marie Chang. "Prior to this, I couldn't let him be out of the house alone."
Now Ethan can take one of the family's phones, which have a built-in intercom system, and have an emergency line to his mother inside as he enjoys some independence - a line he often uses to order deliveries of refreshments, his mother said.
Ethan is living with a degenerative brain disease called Megalencephalic Leukoencephalopathy with Subcortical Cysts, or MLC. He was diagnosed when he was 10 months old. Over time, he will experience the loss of motor skills and cognitive functions. There is no known cure for MLC, and treatment of it is merely supportive.
Because of the disease, any head trauma could be life threatening, so Ethan’s playground includes a ramp with railings rather than a ladder. The clubhouse on top is enclosed, preventing him from falling over the side, and the set sits atop a mat of thick rubber pads usually reserved for commercial playgrounds.
The playground was made possible by the Suffolk County chapter of the Make-A-Wish Foundation. Anne Marie and her husband, Tom, applied for the program at the suggestion of their pediatrician. The nationally-known foundation grants wishes for eligible children, who must be between the ages of two-and-a-half and eighteen years old and have a life-threatening illness.
Dave Gussaroff was Ethan’s “wish granter.” He met the family during the application process and made regular calls to keep tabs on their progress toward determining a wish. Gussaroff said Ethan was younger than most of the “couple hundred” children whose wishes he has granted during his 20 years with the foundation, but noted the boy’s politeness.
“He calls me Mr. Dave, which I get a kick out of,” Gussaroff said with a chuckle.
Gussaroff was aided by Gary Duff Designs of Holbrook, who he said poured the playground’s concrete foundation at a value of $5,000.
The Changs will be hosting a fundraiser barbecue at their home on Saturday, October 1 to benefit the foundation. For more information, contact Kings Park Patch.
“That’s very unique,” Gussaroff said of the effort. “They have very good hearts.”
