Help Michaela Merrill beat Sanfilippo (MPS III)!

For: Michaela Merrill
Wilmington, DE
Organizer: The Merrills
Help Michaela Merrill beat Sanfilippo (MPS III)! (Michaela Merrill)
$25,370
of $50,000 goal.
Raised by 198 donors
50% Complete

The Story

Michaela ("Mickey") Merrill is 3 years old and was diagnosed with Sanfilippo Syndrome (also known as MPS III), a rare genetic disorder sometimes referred to as childhood Alzheimer's. Mickey has subtype-A which is the most common and also, unfortunately, the most severe. She is a bubbly, delightful little girl with a big belly laugh and a giant smile she shares with everyone. She loves her Bear and likes to show off "her baby" little sister Maya.

Michaela was a happy, seemingly quite healthy baby. As the disease progressed, however, she began to lag behind developmentally, especially in speech. It was determined that she has hearing loss and is nearsighted, and testing was performed to see if these issues were related. The testing unexpectedly discovered that she has Sanfilippo. 

As the disease progresses, children with Sanfilippo like Mickey lose their abilities to speak and understand, to walk, and to eat. The current life expectancy is 10-20 years. Currently there is no treatment or cure, but promising research is happening as we speak in both the US and abroad, so there is still hope for her. Her family and friends are working hard to get Mickey admitted into a clinical trial as soon as possible. With the degenerative nature of this illness, time is precious.

Since it is a rare disease, only 1 in 70,000 births, much of the research that has been done has been privately funded by dedicated foundations like the Team Sanfilippo Foundation. We are raising funds to contribute to the Foundation in order to find a cure and treatments for Michaela and all kids like her who have this terrible disease. We also need to raise funds to travel to wherever in the world we are able to get her into treatment- expenses like passports, visas, and airfare.

Thank you for taking the time to read about Michaela and help us. We will post updates often!

*Please note that this fundraising platform may suggest a "tip" in addition to your donation to support it's operations. This "tip" is optional, and can be removed in the blue box directly underneath your donation amount.

Fundraiser Updates

Posted on October 27, 2017

UpdateImage

Posted on October 27, 2017

Newark Chefs Unite to Save Mickey on Monday, December 4th at 6:00

Please join us for a night of delicious food, fantastic wine, and great company for a great cause! Seven courses AND wine pairings are just $125!* Gratuity is included. 

We will be supporting the Team Sanfilippo Foundation's efforts to find a cure for all of the children afflicted with Sanfilippo Syndrome.

Featuring:

Amuse Bouche- Chef Donny Merrill-Skipjack Poached Seckel Pear-duck prosciutto, Monocacy Silver goat cheese mousse, hibiscus crystals, smoked honey 

Soup - Chef Donny Merrill-Skipjack
Maine Lobster French Onion- cipollini, salsify, lobster tomato brodo, lobster brie grilled cheese,saffron essence, crispy iberico 

Appetizer - Chef Sean Howell- Two Stones
Caribbean Jerk Foie Gras- savory banana bread pudding, olive oil poached egg yolk, spiced rum syrup, smoked sea salt, chive 

Seafood - Chef Damian Durnin- Evero Spezia
Basil Roasted Wild Rockfish- smoked scallop, crab and shrimp imperial, creamy porcini polenta, roasted winter squash, sundried tomato pesto 

Intermezzo - Chef Donny Merrill-Skipjack
Golden Kiwi Sorbet, candied lime, dried kiwi 

Meat -Chef Pat Niland- Grain Craft Bar and Grill
Bone In Curry Pork Chop - roasted sweet potato puree, scotch bonnet pineapple salsa, cherry wine glaze, Bulls blood micro greens 

Dessert - Chef Robbie Jester- Stone Balloon Ale House, Touch of Italy
Busted Banana Cream Pie- banana budino, graham cracker tuille, dark chocolate ganache, brulée bananas    

*Limited tickets without wine pairings available for $100
Tickets are available now at https://savemickey.ticketspice.com/chefs-unite-to-save-mickey-and-cure-sanfilippo-syndrome Please order yours today, as this event will sell out! 

For more information on Mickey and Sanfilippo syndrome, see SaveMickey.com


Posted on October 15, 2017

Posted on October 15, 2017

Our very dear friend Kat Lynch is donating the proceeds from her LuLaRoe business through  10/21 to Sanfilippo research! We very much appreciate it and hope you'll check out her great sales at https://shoptheroe.com/party/732155586p/

Please share it with your friends, as well! Thank you :)


Posted on October 15, 2017

Posted on October 15, 2017

Our very dear friend Kat Lynch is donating the proceeds from her LuLaRoe business through  to Sanfilippo research! We very much appreciate it and hope you'll check out her great sales at https://shoptheroe.com/party/732155586p/

Please share it with your friends, as well! Thank you :)

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