Mickey's Latest

Every year on November 16th, children with Sanfilippo and their loved ones join together to raise awareness, helping more families get the diagnosis earlier and raising funds for a treatment or cure.

Early diagnosis is critical, as younger children are more likely to be invited to participate in clinical studies, and early intervention services make a huge impact in our kids' quality of life.

Big thanks to Mickey's team at school for wearing their Save Mickey shirts in support! Join us next year by wearing purple, unicorns, or of course your own Save Mickey gear!

WOW does Mickey's village know how to party! We are so grateful for the thousands of you who braved the heat and joined us for MickeyFest's return to Old New Castle! Big thanks to all of the volunteers, bands, vendors, and sponsors who made this year's Fest such a success. Mickey and Declan had a wonderful time and could feel the love. They especially enjoyed meeting the animals in the petting zoo, and Mickey got to ride a pony! Together you raised over $28,000 to save our kids and the thousands of other kids out there who suffer from this disease. Can't wait to see you next year!

Eating has always been one of Mickey's greatest joys, and you can't help but smile when you feed her! As the Sanfilippo progresses, however, eating by mouth becomes more challenging.  After terrifying choking incidents in 2021, her diet was changed to honey-thick liquids. Ever since, Mickey's rock-star care team has been able to keep her happy and healthy with special meals and high-calorie supplements. 

Unfortunately, Mickey is having a harder and harder time swallowing, so the family has made the difficult decision to proceed with a feeding tube (coincidentally named a MIC-KEY!).  This will help Mickey stay healthy, but is a grim landmark in her Sanfilippo journey.  Please join us in praying for a smooth surgery and recovery in January of 2024. 

Thank you to everyone who volunteered for and attended Chefs Unite 2023! We greatly appreciate the sponsoring restaurants and chefs, Hippocampus and Duane Dillard who shared their beautiful music, everyone who came out for a great time for a great cause, and to the Delaware News Journal for sharing Mickey and Declan's incredible story. Together we raised over $30,000 towards a cure!

Thank you to everyone who joined us at Fort DuPont for MickeyFest 2022, and to all of our generous sponsors! A great time was had by all, and together we raised thousands of dollars towards Sanfilippo research!

In March of 2021 Mickey became big sister to two! Her baby brother Declan "Octopus" Merrill was diagnosed with Sanfilippo in utero and came into the world with a bang! Please join us in praying for his health and happiness. 

With help from Tender Hearts, Lori's Voice, and the Delaware Division of Disabilities Services, Mickey now has a stairlift! She loves flying up and down, and her parents love that she's safer now, too! Thank you so much to all the organizations that helped!

MickeyFest 2019 was an incredible community event! Thank you to everyone who came out to Old New Castle, all of our bands, vendors, and volunteers, and to the City of New Castle! An estimated 4,000 people came out to show their support for Mickey. There were bands, food vendors, and everything from pony rides to facepainting to axe throwing, including a well-attended children's section. Over $20,000 was raised to  help push Sanfilippo research forward! We can't wait to do it again in 2020!

The Save Mickey Association is now an officially recognized nonprofit! Now all the generous donations by our supporters and sponsors are tax-deductible. Our 501(c)3 number is 37-1900940.  Thank you to Phil Lowe of Prudential financial advisers for donating his time and knowledge to help us with the paperwork! 

Thank you to all of our volunteers, sponsors, and attendees for making the inaugural Mickey Golf event such a success! Hosted by Deerfield Country Club on May 6th, 2019, more than 110 participants and dozens of volunteers were in attendance. Combined with the Cinco de Mayo-themed silent auction held at Skipjack Dining the previous evening, almost $30,000 was raised to fight Sanfilippo Syndrome. We thank each and every one of you, and look forward to next year's event!

This little lady, Lauren, asked all her friends to donate money to Sanfilippo research for her birthday instead of buying her toys.  We were so touched that someone so young would do something so selfless. Her parents should be very proud of her!

11-year old Blakely Stawicki organized a shoe drive to help Save Mickey! She collected 4, 425 pairs of new and gently used shoes to raise money for Sanfilippo research through Funds2orgs. Blakely thought this up all on her own and took the initiative to make it happen. You can read all about her efforts here!

Two remarkable young ladies from Middletown High, Ashten and Jess, spent Rare Disease Day at AI Dupont Hospital raising awareness of Sanfilippo Syndrome! As part of their organization HOSA- Future Health Professionals- they researched the disease, made a very informative poster and presentation to all of the attendees, and even raised funds to fight Sanfilippo. We're very grateful for all of their hard work! 

When Mickey's friends the Kunicki's found out that she was sick, they decided to pitch in! The boys held a lemonade stand in September to raise awareness of Sanfilippo, and it raised almost $200 to help push Sanfilippo research forward! We are very proud of them and touched by what they did. Thank you to the whole Kunicki family! 

Some things just go surprisingly well together! Thank you to Pietro's Pizza at Argilla Brewing Company, The Sin City Band, Santa, and to everyone who came out to the pizza party benefit! Mickey had a great time dancing with everyone and she loved the Mac & Cheese pizza, too. She even took her Mommy's slices! 

Between the fundraisers and Pietro's kindly donating the proceeds from Mickey Pizza and Mickey Juice, you raised almost $2,000 for Sanfilippo research! Thank you from the bottom of our hearts!

Thank you to everyone who came out to the Logan House on December 2nd! It was a great time with great people and great energy, and together we raised several thousand dollars for Sanfilippo Syndrome research! We all had so much fun- we're hoping Fat Daddy Has Been won't wait another four years for their next reunion show! Stay tuned! 

In early November, The Newark Post  wrote an excellent article about Mickey to spread awareness of SanFilippo Syndrome and help us promote our upcoming fundraisers! You can read the full article here.  Thank you to our hometown paper for helping us get the word out and Save Mickey!

Several dedicated Sanfilippo Research Foundations have joined together to give Abeona Therapeutics a $13.85 million dollar grant to help their research advance swiftly!

For more info, please check out the full press release here.

WSTW Hometown Heroes host Mark Rogers interviewed Fat Daddy Has Been to promote the upcoming Logan House show and to raise awareness of Sanfilippo Syndrome! The segment included tracks off of each of FDHB's albums as well as some live in-studio performances. You can hear a podcast of the 11/26/17 show for another two weeks here on the Hometown Heroes Website . We truly appreciate WSTW's support and especially Mark Rogers' help as we fight to Save Mickey! 

Thank you so much to everyone who came out to Tailgates for the country line dancing fundraiser in September! Mickey had so much fun dancing along!

Big thank you to the Dance Bullies for designating their cover charges for the evening to Mickey's fundraiser!