Newark rallies to help girl
Fundraisers planned for toddler with fatal disorder
Sitting on her dad’s lap and playing with her beloved teddy bear Sunday afternoon, Michaela “Mickey” Merrill seemed to not have a care in the world.
Sadly, though, the happy-golucky 3-year-old was diagnosed two months ago with Sanfilippo Syndrome, a fatal genetic disorder. Mickey is in the early stages of the disease but will gradually lose her ability to speak, understand, walk and eat. The life expectancy of a child with Sanfilippo is 10 to 20 years.
With that in mind, Mickey’s parents, Donny and Molly, are in a race against time to help find a cure for the rare disorder, which affects only 1 in 70,000 kids. They recently launched a website, www. savemickey.com and are planning a number of events to raise money and awareness for Sanfilippo research.
“The first thing we were told is to make people find out about it,” said Donny, the owner and executive chef at Skipjack Dining in the Shoppes at Louviers. “Nobody knows anything about it. Even the doctors have to look it up to treat her.”
Children with the disorder lack an enzyme essential to clearing metabolic waste out of their cells. Over time, the cells in their brain die from the accumulation of this waste.
Sometimes referred to as “children’s Alzheimer’s disease,” Sanfilippo causes children to gradually lose their abilities and eventually slip into a vegetative state before dying, usually in their teenage years.
There is no treatment or cure for Sanfilippo, though there are some clinical trials in the works, including gene therapy and enzyme replacement therapy, according to the nonprofit Team Sanfilippo Foundation.
Like most kids with Sanfilippo, Mickey was born happy and heathy but began to show developmental delays at around 18 months old, Donny and Molly said. Initially, doctors blamed the delays on hearing and vision difficulties.
“There was always a reason behind it,” Molly said, explaining that she and her husband never realized there was a more serious underlying cause.
Two months ago, though, additional testing returned a diagnosis of Sanfilippo.
After the diagnosis, the Merrills decided to find ways to raise money and awareness. Donny has been in the restaurant business since he was a teenager washing dishes at the Rusty Rudder in Dewey Beach, so naturally he turned to what he does best: cooking.
On Dec. 4, he will team up with several other Newark-area chefs to host a benefit dinner at Skipjack. Pat Niland of Grain Craft Bar + Kitchen, Damian Durnin of Evero Spezia, Robbie Jester of the Stone Balloon Ale House and Sean Howell of Two Stones Pub, as well as Donny, will all contribute dishes to the $125-a-plate dinner.
“I just figured I’d use the resources I have,” Donny said.
He said the chefs agreed to help immediately, several members of his waitstaff volunteered to work that night for free and many regular customers have bought tickets.
“The community around here has been fabulous,” Donny said. “The way you see people come together when somebody is in need is incredible.”
“Everybody jumped in and wanted to do something,” Molly added.
In addition, Donny plans to reunite his former band, Fat Daddy HasBeen, for a Dec. 2 benefit show at Kelly’s Logan House in Wilmington. He and Molly are also organizing a gala, a 5K walk, a silent auction and other fundraisers. Most of the money raised will go to the Team Sanfilippo Foundation, with some set away for travel expenses in case the family has to travel to get treatment for Mickey.
For more information about the events, visit www.savemickey.com.
Three year-old Michaela “Mickey” Merrill, shown here with father Donny, mother Molly and baby sister Maya, recently was diagnosed with Sanfilippo Syndrome, a rare genetic disorder. Maya, 4 months old, tested negative for the condition.