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

When doctors told Donny and Molly Merrill in late August that their 4-year-old daughter Michaela had a terminal disease with no cure and possibly only several more years to live, a wave of helplessness washed over them.

Like all parents, they're used to coming up with solutions to all kinds of problems for Michaela, known as Mickey to those who know the cheerful, bespectacled little girl.

It's a wicked position too many mothers and fathers are familiar with: a terminally ill child whose health and well-being are largely no longer in their control.

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And that's why in the three months since Mickey was diagnosed with Sanfilippo syndrome, a neurodegenerative condition that attacks the brain and has no cure, the Merrills have trained their focus on education and research.

Last week, their "Save Mickey" awareness and fundraising campaign hosted the first in a series of events to raise awareness about the progressive disorder, which affects 1 in 70,000.

The Merrills, who own and run Skipjack Dining near Newark, welcomed 150 friends, family and well-wishers to a sold out $125-per-plate dinner on Monday, which was moved from Skipjack to Newark Country Club to handle an overflow crowd. (Two dozen others were on a waiting list to get in.)

The night wrapped up with the Merrills and their volunteers standing before the crowd.

"When I was telling the story, I looked out and saw half the place crying," says Donny, a longtime Delaware chef and musician. "All this support — it hits you in the feels. We've been crying for three months. This was a happy cry for us."

Two days prior, Newark hip hop/rock act Fat Daddy Has Been, which features Donny as their drummer, reunited for a fundraising concert at Kelly's Logan House, which attracted a shoulder-to-shoulder crowd.

The two events raised about $30,000. Combined with funds raised via their YouCare fundraising page, Facebook fundraising and other donations, a total of $60,000 has been raised — all of which will go to Team Sanfilippo, a leading New York-based non-profit medical research foundation seeking a treatments and a cure.

Some of the money also came from Skipjack customers who heard the news and decided to hand over extra cash to their server for "Save Mickey."

With researchers around the world busily working on cracking the code to a cure or treatment for the disease nicknamed by some as "childhood Alzheimer's," research is where the Merrills are focused.

And since patients with Sanfilippo syndrome eventually plateau, leading to a gradual loss of all skills before slipping into a vegetative state and dying, every day matters.

"Everything is a ticking time bomb because she can plateau at any time and start moving backwards," Donny says. "We knew we can't just sit here and do nothing. And once we learned that it was all about awareness and money, we thought about all the people we know in the restaurant and music businesses and figured this is a good way to do it."

Molly remembers what her husband told her the night of Aug. 29, hours after they first learned of Mickey's disease and many tears later: "We're going to cry for a few more hours and then tomorrow we're going to kick Sanfilippo's ass."

Ever since, the Merrills, who were married in 2012, have thrown everything they have into saving Mickey, who turned 4 on Thursday.

Damian Durnin, chef at Kirkwood Highway's new Evero Spezia restaurant near Newark, was one of the guest chefs who volunteered for Monday's dinner. A friend of Donny's for 20 years, he first met Molly as a bartender at the old East End Cafe in Newark and he's not surprised at the couple's determination in the face of great odds.

"Molly is like a Jack Russell Terrier — when she gets her teeth into something she doesn't let go," Durnin says. "She has such determination and there's not an inkling that either of them is giving up. They are fighting tooth and nail." 

The Merrills first started realizing Mickey's language and speech were delayed between the ages of 1 and 1-1/2. It took a while for doctors to figure out what was wrong.

At first, doctors focused on Mickey's ear infections as a possible cause and put tubes in her ears. It didn't help.

Then attention turned to the fact that she was extremely near-sighted, which could affect learning speech and language. She got her now-trademark glasses and didn't improve as they hoped.

Eventually, doctors decided to look into Mickey's genetics, thinking it could be Overgrowth syndrome because she was tall for her age. Instead, testing determined it was Sanfilippo, named after Minnesota pediatrician Sylvester Sanfilippo who first described the disease in 1963.

That alone was devastating. And then it got worse. Because Sanfilippo is a hereditary disorder, attention immediately turned to the Merrills' other daughter, Maya, who had been just born in June.

She was tested for Sanfilippo, and the Merrills prayed through an agonizing two week wait to learn that Maya did not have the disease.

Mickey is too young to understand what she faces. When made her appearance at last week's fundraising dinner, she didn't quite know why she was getting all this extra attention.

"She was like, 'Cool. Everyone's really happy to see me," Molly says. "One blessing of it is that she has no clue that anything is wrong. She just enjoys every moment as a crazy-happy kid, so we still have that."

Even so, Mickey is battling serious Sanfilippo symptoms that include seizures, gastrointestinal issues, problems sleeping and trouble with verbal communication, hearing and vision.

"She's turning 4, but she's still acting like a 2-1/2-year-old. She hasn't developed communication and comprehension," adds Donny, who is also drummer for the Wilmington reggae act Brixton Saint and did the same for Newark band Grinch, a jam band that played all over Delaware for years and toured nationally.

The Merrills know of only two other Delaware children with the disease: Brandywine Hundred brothers Ryan and Brayden Kapes, who were featured in a News Journal article last year when their father Carl reached the $1 million fundraising mark for Sanfilippo.

Skipjack sous chef Don'ta Whitley — known as Uncle Don to Mickey — has known and worked with Donny for 17 years. He's been helping to pick up slack at the restaurant as the Merrills cope with their daughter's plight while keeping the restaurant afloat at the same time. Whitley was at Newark Country Club until midnight after working at Skipjack all day, even jumping into "dish pit" to help wash the 1,100 plates that were used.

"We happen to be friends that work together. Their concerns are mine," says Whitley, one of the hundreds of people who have stepped up for the Merrills, a testament both to the the cause and the couple's character.

"I'm going to speak for everybody here: We're pulling to do whatever we can to help the outcome of this thing," Whitley says. "When you're family, you're family. This affects us all."

The final Save Mickey event for the year will be a pizza dinner with Santa Claus at Argilla Brewing Co. at Pietro's Pizza near Newark on Monday, Dec. 18 starting at 4 p.m.

Mickey's favorite pizza, Mac & Cheese pizza, is Argilla's Pizza of the Month. If you buy her pizza with "Mickey juice" — both kid and adult-friendly available — the proceeds will go to the cause. 

A spring chef's dinner similar to the one held at Newark Country Club is already being planned with chefs from Hockessin restaurants Six Paupers Tavern and Back Burner Restaurant, Chadds Ford-based Brandywine Prime and more.

Also on deck: a family-friendly festival with music, food, games and more in the spring or summer, along with an end-of-the summer barbecue with Stone Balloon Ale House chef and former “Beat Bobby Flay" contestant Robbie Jester.

As a chef and musician, Donny has done plenty of fundraisers for others over the years. It's been overwhelming to now be in the position of someone who needs the help and support.

"It's amazing to see everybody jump in," Donny says. "We're blown away by the kind of people that we know — and even people that we don't know."

Contact Ryan Cormier of The News Journal at rcormier@delawareonline.com or (302) 324-2863. Follow him on Facebook (@ryancormier), Twitter (@ryancormier) and Instagram (@ryancormier).

IF YOU GO

WHAT: "Save Mickey" pizza dinner with Santa Claus. Mickey's favorite pizza, Mac & Cheese pizza, is Argilla's Pizza of the Month. If you buy her pizza with "Mickey juice" (both kid and adult-friendly available), all of the proceeds will go to the cause. 

WHEN: Monday, Dec. 18, starting at 4 p.m. In addition, the Sin City Band performs from 6 p.m. to 9 p.m.

WHERE: Argilla Brewing Co. at Pietro's Pizza, 2667 Kirkwood Highway, Milltown

INFORMATION: savemickey.com