Community rallies behind Newark girl with rare Sanfilippo syndrome

In the year since 4-year-old Mickey Merrill was diagnosed with a rare, terminal disease, the effects of her Sanfilippo syndrome are more pronounced and the scramble to get her the best help possible has become more urgent.

While Mickey's parents are preparing for a new journey – taking part in a clinical trial with hopes of discovering a treatment for the incurable neurodegenerative condition – their army of friends, family and supporters are stepping up once again. 

A tight-knit group of volunteers will help Donny and Molly Merrill, owners of Skipjack Dining near Newark, host Rockin' in the Park at Delaware Park on Friday -- a free, kid-friendly, seven-hour music festival affectionately dubbed Mickeyfest.

Not only is Donny the chef/co-owner of Skipjack, but he's also been a drummer for local bands in the area going back decades. These days he plays with Wilmington reggae act Brixton Saint, but also sat behind the kit for crowd-pleasers such as rap-rock hybrid Fat Daddy Has Been and regional jam powerhouse Grinch.

With a lifetime of food and music connections in Delaware, Rockin' in the Park is an all-hands-on-deck affair with former band members flying from Canada to perform, fellow chefs cooking meals and supporters ready to make a donation.

When the festival is in full swing, Donny Merrill will be able to look in just about every direction and see a friend, co-worker or family member helping out.

It's not something you really get used to, but the Merrills have watched as their community has helped with a string of benefits and fundraisers in Mickey's name, raising $100,000 so far.

"There's really no way to describe it," Donny Merrill says of the overwhelming support. "I don't think it has settled in yet."

If you were a music fan in the '90s in Newark, Rockin' in the Park is for you.

The festival will include rare full band reunions for Grinch (9:45 p.m.) and Fat Daddy Has Been (8:55 p.m.). It will be Grinch's first show in seven years. Fat Daddy reunited earlier this year for a previous Mickey benefit. Donny Merrill will be on drums for both sets by his former bands.

Caravan, a jam band founded in the basements of Wilbur Street by University of Delaware students in 1994, will also reunite for the special event. They go on at 8:05 p.m.

Other acts include festival closers and Wilmington reggae favorites Spokey Speaky (11:20 p.m.), Bullbuckers (10:40 p.m.),  Phatboddum (7:20 p.m.), Brixton Saint and Xtra Altra (6:30 p.m.), Steve Pepper (5:40 p.m.) and the Andrew Bedell Collective (5 p.m.)

"If it wasn't for Mickey, we wouldn't be here all together. We're on a mission from God," Stephen Bailey, Grinch guitarist, says over a beer during a break from rehearsals earlier this week.

He jokes that the festival is going to be like "Wilberfest, but we're all grown up," referencing the late, great annual University of Delaware DIY backyard concert that ended its wild, decadeslong run years ago.

While there will be an eclectic mix of rock, reggae, jam, hip-hop and more on an outdoor stage, there will also be 11 food trucks from The Rolling Revolution food truck group nearby, along with a beer truck. 

Food trucks will include Outlandish, Mojo Loco, Masala Kitchen, Deerhead Hot Dogs,  I Don't Give A Fork, Maiale, Roaming Raven, Sweet Josephine's, Cajun-Sno, Koi on the Go and WiLDWiCH.

Nearby, the outdoor grove picnic area will transform into a children's play area complete with bounce houses, games and activities.

The festival comes at a busy and somewhat promising time as Mickey prepares to enter a clinical trial, which the family is restricted from talking about in detail.

It was about a year ago when the blonde, bespectacled little girl was diagnosed with Sanfilippo, which attacks the brain. It was then that the Merrills learned every chilling detail of the disease, which is so rare only two other children in Delaware are known to also suffer from it.

Sanfilippo is nicknamed "childhood Alzheimer's" by some, affecting 1 in 70,000. Patients with Sanfilippo eventually plateau, 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.

Without a cure or treatment for the progressive disorder, the Merrills main focus has been raising money for the organization pushing for Sanfilippo research, the Team Sanfilippo Foundation. The New York-based nonprofit medical research foundation is seeking both treatments and a cure.

"Everything is a ticking time bomb because she can plateau at any time and start moving backwards," Donny Merrill told The News Journal when she was first diagnosed.

That's why every day (and dollar) matters. Like many families struck with Sanfilippo, the Merrills have turned their focus to the greater cause of funding a research with hopes that researchers will find a way to slow down or cure the disease not only for their child, but for all.

Donations will be accepted for Team Sanfilippo at the festival.

Outlandish Food Truck owner Melissa Ferraro is one of the many who help put together the festival, which started just as a collaborative food truck event between the food truck group and Delaware Park. Once word began to spread about a possible festival for Mickey, they teamed up and Mickeyfest was born.

The group effort isn't just inspiring for the Merrills, but also for those lending their help for such an immediate, heart-wrenching cause. 

"Just being in the planning meetings is inspiring as you watch everyone buckle down, divide and conquer and get things done," says Ferraro, who has known the Merrills for about 15 years. "It's amazing to see so many people around them give anything they can -- time, money and whatever else it takes."

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: Rockin' in the Park

When: Friday, 5 p.m. to midnight

Where: Delaware Park, 777 Delaware Park Blvd., Stanton

Bands and set times: Spokey Speaky (11:20 p.m. to midnight), Bullbuckers (10:40 to 11:10 p.m.), Grinch (9:45 to 10:30 p.m.), Fat Daddy Has Been (8:55 to 9:35 p.m.),  Caravan (8:05 to 8:40 p.m.), Phatboddum (7:20 to 7:55 p.m.), Brixton Saint and Xtra Altra (6:30 to 7:10 p.m.), Steve Pepper (5:40 to 6:15 p.m.) and Andrew Bedell Collective (5 to 5:30 p.m.)

Cost: Free

Information: facebook.com/DelPark