A fundraiser will take place on Saturday, Sept. 15 for a 9-year-old boy who has been diagnosed with Sanfilippo Syndrome.
Submitted
Growing up in Chappaqua, NY, Seoul BBQ restaurant owner Mark Moon, a West Hartford resident, remembers home-cooked Korean meals that his mom would whip up for family celebrations.
This Saturday, Sept.15, Moon is carrying on that tradition at his eatery in honor of his nephew Jacob’s 9th birthday. That’s because, for Jacob, every birthday is a special one.
Two years ago, Jacob was diagnosed with Sanfilippo Syndrome (Mucopolysaccharidoses MPS-IIIA), a rare, degenerative condition that affects 1 in 70,000 children in the US each year. Jacob is one of a handful of children in the tri-state area who suffers from his specific type of Sanfilippo Syndrome. Simply put, Jacob lacks an enzyme that breaks down cellular waste. This waste will eventually reach toxic levels destroying his brain over time. This will result in major regression and tragically reduce his life expectancy to his late teen years.
Jacob’s dad is Mark Moon’s older brother, Bill. Bill and his wife Christine live in Dobbs Ferry, NY with Jacob and his siblings, 11-year-old Ella and 5-year-old Matthew.
“As his uncle and a father myself, I can tell you that Jacob is the heart and soul of our family. Like any other kid, he loves watching ‘Toy Story’ and jumping on trampolines. Sadly, he is at an age when the disease takes a stronger hold. He speaks less, his physical and mental growth is slowing, his memory is waning. I will do anything I can to help,” Mark Moon said.
And that’s what Mark is doing on Saturday. He will donate all Seoul BBQ lunch and dinner receipts that day to the Cure Sanfilippo Foundation. The foundation puts money toward clinical research trials, which have lost millions in funding in recent years. These trials are the only hope families like the Moons have for raising awareness and someday finding a cure.
He hopes to surpass last year’s fundraising tally of $3,000. In the meantime, Jacob is looking forward to platefuls of kalbi (grilled Korean short ribs), his favorite dish on the menu. Mark added, “Whatever Jacob wants, he will get. Saturday is his day. We hope to see you all there, too.”
For more info, please follow Jacob’s Journey on Facebook and the Cure Sanfilippo Foundation at curesff.org.
Since 2013, Seoul BBQ & Sushi, 593 Hartford Rd. New Britain, CT (near Westfarms) has been serving up delicious, authentic Korean cuisine, earning Best Korean Restaurant accolades from the Hartford Courant.
For more information, contact Bill Moon 917-658-2227 or [email protected].
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