All-star roster of 14 national & local chefs cooking together in support of one of their own

Ryan Cormier, Delaware News Journal
Updated ·7 min read

It's pretty rare to have nearly 15 of some of the best-known chefs in Delaware all cooking and personally plating their creations for you.

It's even more unusual for it to be a four-hour, all-you-can-eat affair. But that's what foodies will find if they attend this year's Chefs Unite to Save Mickey next week.

What is Chefs Unite to Save Mickey?

Held Monday, April 17, from 6-10 p.m., this unique fundraiser is in its third year. It's the kind of event only a well-liked chef could pull off.

Owner/chef of Newark-area restaurant Skipjack Dining (401 Louviers Drive, Shoppes at Louviers), Donny Merrill has once again attracted a deep bench of upstate chefs to help raise money to help his 9-year-old daughter Michaela "Mickey," who suffers from a rare (and currently incurable) neurodegenerative condition called Sanfilippo syndrome.

Molly and Donny Merrill with their children (from left to right Declan, Maya and Mickey) on Easter earlier this week.
Molly and Donny Merrill with their children (from left to right Declan, Maya and Mickey) on Easter earlier this week.

Chefs Unite will once again take over the dining room at Deerfield Golf Club (507 Thompson Station Road, near Newark), expecting up to 250 guests. Organizers hope the event will raise $40,000.

Fourteen chefs will be representing their restaurants in support of Merrill and his wife, Molly, whose nonprofit Save Mickey Association raises funds to help fund research projects working toward a cure for Sanfilppo, which is a terminal disease.

For Merrill, it's hard not to get choked up thinking about the wave of support he gets each time from his fellow chefs. This year ― the first Chefs Unite since the pandemic ― it's especially touching considering the tumult it still inflicts on kitchens nationwide.

"It gets emotional," Merrill says, his voice cracking. "You're talking about chefs who are short-handed already and they say, 'Screw it. I'm going to take an entire day off, come down and volunteer to cook.'

Michaela "Mickey" Merrill has been diagnosed with Sanfilippo syndrome, a rare terminal disorder with no known cure. She is pictured in 2019.
Michaela "Mickey" Merrill has been diagnosed with Sanfilippo syndrome, a rare terminal disorder with no known cure. She is pictured in 2019.

"There was no question they were coming. I mean, I had a waiting list at one point."

Who will be there?

The local, national and celebrity chefs cooking up a storm at the third annual Chefs Unite include:

Newark chef Robbie Jester, right, is shown cooking on "Pressure Cooker," the Netflix cooking competition he won earlier this year.
Newark chef Robbie Jester, right, is shown cooking on "Pressure Cooker," the Netflix cooking competition he won earlier this year.

Newark's Little Goat Coffee Roasting Co. will provide the coffee, and there will be live music performances by Hippocampus and Duane Dillard.

What are some of the dishes they will be serving?

While the complete menu was still being finalized, Merrill gave a preview of some of the dishes, including 30-day dry-aged wagyu, Kobe beef cheeks, foie gras-stuffed scallops and maple-cured smoked salmon.

A shrimp dish at Chefs Unite to Save Mickey in 2020.
A shrimp dish at Chefs Unite to Save Mickey in 2020.

How much is it and what do you get?

Tickets for Chefs Unite cost $150 for individuals or $1,200 for a table of 10 people. Tickets are available at savemickey.com. It includes all the dishes from the chef stations, along with a top-shelf open bar.

The history of Save Mickey

When Mickey was first diagnosed with the rare Sanfilippo syndrome ― it affects 1 in 70,000 births ― it kickstarted what has been a marathon for the Merrills, who have thrown themselves wholly into trying to save their daughter from the genetic metabolism disorder.

Mickey Merrill and her brother Declan. Both children have been diagnosed with Sanfilippo syndrome.
Mickey Merrill and her brother Declan. Both children have been diagnosed with Sanfilippo syndrome.

The personal fight has gained a new wrinkle in recent years when Mickey's brother Declan, now 2, was also diagnosed with Sanfilippo, nicknamed "childhood Alzheimer's" by some. (Their third child, 5-year-old Maya, does not have it.)

In addition to their trio of major fundraisers held each year, the Merrills have crossed the country in hopes of saving their daughter, entering her in a clinical trial that forced the family to leave Skipjack in the hands of their staff and move to California for more than a year in 2018.

Time was of the essence: Patients with Sanfilippo eventually plateau as it attacks the brain, leading to a gradual loss of all skills before slipping into a vegetative state and dying. Life expectancy generally ranges from 10 to 20 years old.

The family was able to move back to Delaware in 2019 when Nemours/Alfred I. duPont Hospital for Children in Rockland was able to offer the rare treatments for the study, which used enzyme replacement therapy.

Even though they saw positive results for their daughter, which buoyed their hopes for a cure, the study was defunded in early 2020 just as the pandemic began after not finding a buyer. It was a devastating blow for the family, which had sacrificed and invested so much to keep Mickey in the study.

When the results were released in 2022, Molly Merrill, who works as a social service administrator for the state, wrote a heart-wrenching post on Facebook after seeing some of the positive gains it detailed:

"If I knew then what I know now and I could take back that whole year in California ― 100 weeks of half-inch needles stabbed into Mickey’s chest, I don’t even remember how many sedations and spinal taps, all the heartbreak and stress ― I wouldn’t. We were one of the lucky few who got a chance. And for that short sweet time, we had our Mickey and her future back. Not gonna lie, seeing this twists the knife. But seeing how close we came before we got shot down just goes to show there’s a lot of research yet to be done. And somebody’s gotta fund it. Tonight we’re going to go howl at the moon for a bit. Tomorrow we’re going to get back to work."

Even three years after the study was halted, Donny Merrill still has a hard time even talking about it, only able to squeeze out the words, "It's like getting your heart ripped out," during an interview last week.

These days, Mickey suffers from a deterioration of motor skills, along with vision and hearing impairment and requires nonstop care from her parents and their team of therapists and caretakers. In a wheelchair most of the time, the Merrills report that she is still a comfortable and happy little girl.

The crowd at Chefs Unite to Save Mickey at Deerfield Gold Club in 2020.
The crowd at Chefs Unite to Save Mickey at Deerfield Gold Club in 2020.

While she is not back in another clinical study, she does receive specialty treatments at Nemours.

Her brother, Declan, is doing well except for some minor hearing loss. He has been in a clinical study since the age of 6 months.

Other Save Mickey events coming up

In addition to Chefs Unite, there are two other major fundraisers hosted by the Merrills each year to benefit Sanfilppo research.

MickeyGolf, an annual golf tournament also hosted by Deerfield, will be held June 5 with registration opening soon at savemickey.com.

Donny Merrill, drummer and chef/owner of Newark-area Skipjack Dining (left) and members of the band Grinch rehearse for a concert benefitting Merrill's daughter Mickey in 2018.
Donny Merrill, drummer and chef/owner of Newark-area Skipjack Dining (left) and members of the band Grinch rehearse for a concert benefitting Merrill's daughter Mickey in 2018.

And MickeyFest, a family-themed all-day slate of live local band performances and activities, is tentatively slated for its fourth edition in late August. It has been held everywhere from Old New Castle to Fort DuPont in the past.

Just like the local chef community, Merrill has always found strong backing from the state's music community. He is a longtime drummer, performing with everyone from Fat Daddy Has Been to Grinch over the years.

FROM 2017 After terminal diagnosis, Delaware musicians & chefs rally behind Newark girl

DELAWARE EATS Sign up for longtime DelawareOnline/The News Journal food writer Patricia Talorico's weekly newsletter

SPRING HAS SPRUNG After 66 years, Fusco's Italian Water Ice expands statewide, including at Blue Rocks games

SULLY'S IRISH PUB The 'Rodney Dangerfield of bars'- the state's oldest - is (finally) getting some respect

FOOD HALLS DE.CO and The Chancery Market face off. We size up Wilmington's twin major food halls.

Have a story idea? Contact Ryan Cormier of DelawareOnline/The News Journal at rcormier@delawareonline.com or (302) 324-2863. Follow him on Facebook (@ryancormier) and Twitter (@ryancormier).

This article originally appeared on Delaware News Journal: 'Chefs Unite to Save Mickey' takes over Deerfield Golf Club on April 17