Newark ral­lies to help girl

Fundrais­ers planned for tod­dler with fa­tal dis­or­der

Newark Post - - FRONT PAGE - By JOSH SHAN­NON jshan­non@ches­pub.com

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.

NEWARK POST PHOTO BY JOSH SHAN­NON

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.

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