by W. B. King –
The second annual MOONBALL Tournament & Family Fun Day brought together hundreds of local residents supporting a fun-loving, 10-year-old boy, Jacob Moon, who was diagnosed with Sanfilippo Syndrome three years ago.
“The outpouring from the community is beyond overwhelming. Words really can’t express how grateful we are for the constant love, support and acceptance,” said Christine Moon, whose family has called Dobbs Ferry home for eight years. “After Jacob’s diagnosis, and our community’s quick response to help us in any way possible, we really knew Dobbs Ferry was the perfect place for our family.”
Sanfilippo Syndrome, also referred to as Childhood Alzheimer’s, affects one in 70,000 children in the U.S. each year. As a result of the disease, Jacob lacks an enzyme that breaks down cellular waste. Moon explained that this waste will continue to reach toxic levels ultimately destroying his brain. Jacob’s life expectancy is his late teen years. And while there are a few million-dollar clinical trials ongoing, there is currently no treatment or cure.
“He’s lost some mobility on his left side and has grown much quieter in the past two years. It’s the hardest thing in the world to know that one day we will lose him,” said Moon. “We try not to think about it. It is an unbearable reality, but it is our reality.”
A few years ago, Christine Moon’s friend, Brooke Bass, learned of Jacob’s diagnosis. Bass’s daughter and Jacob had been in the same kindergarten class. The two mothers are good friends.
“Jacob is a big personality. He is the sweetest boy you’ll meet. He has a great smile and loves to laugh. There is nothing like being on the receiving end of one of Jacob’s smiles and hearty laughs,” said Bass. “He is pure innocence.”
Another mutual friend of Christine Moon, and mother to another of Jacob’s friends, Patti Hartnett, was also saddened to learn about Jacob’s diagnosis.
“Jacob was in the same preschool class as my daughter. The kids were rather fond of each other. I was a Jacob fan from the very beginning. He was a kind friend to my daughter and a high energy kid,” said Hartnett. “It’s different now, but his smile can still light up a room.”
Bass and Hartnett, both residents of Dobbs Ferry, decided to organize a charitable event that would bring people together through sports and various fun activities. This gave rise to the inaugural MOONBALL event. Initially, the co-producing team thought to organize a baseball game to raise money, but instead settled on another sport that everyone could play: kickball.
“We don’t have millions of dollars to give to medical research for a cure, but we can bring the community together and teach people more about the disease,” said Bass. “In addition, we wanted to raise money for Jacob’s changing needs.”
Last year the event raised $12,000. This year’s event, which took place on November 2, at Gould Park in Dobbs Ferry, was even larger and included bounce houses, carnival games, raffles, refreshments as well as a kickball tournament. The Dobbs Ferry Fire Department and Dobbs Ferry Police Benevolent Association were also on hand in support.
“We had about 270 kids registered. There were 26 teams. We also had a buddy ball game, which consisted of about 10 special needs children, including Jacob,” said Bass. “There were high schoolers assigned to each kid and they helped them kick the ball and run to the bases. It was so great that Jacob and his classmates could participate.”
Hoping for a Cure
The 2019 MOONBALL event raised more than $18,000. Christine Moon said that these funds will be directed toward research aimed at finding a cure for Sanfilippo Syndrome.
“We partner with an amazing organization called the Cure Sanfilippo Foundation,” said Christine Moon. “They work with various research facilities and they work with companies to get more clinical trials running.”
Christine added that the rest of the Moon family, including her husband, Bill, and Jacob’s siblings, Ella, 12, and Matthew, 6, also enjoyed participating in this year’s event.
“Last year Jacob slept through the beginning half of the event! This year he was in the mix from the beginning! He was happy running around with his friends and to see his teachers,” she said. “Jacob does not understand his disease. He is a happy little boy. He lives life to the fullest, surrounded by family, friends and food!”
Jacob’s younger brother, Matthew, was overjoyed that so many people came together in support of his family and his big brother.
“It’s a fun day. We get to run around, kick the ball and be with friends,” said Mathew Moon. “It was all for my brother!”