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filler@godaddy.com
Signed in as:
filler@godaddy.com
Thank you so much to all the volunteers and attendees who made MickeyFest 2024 so fantastic and didn't let a little rain stop the party!
Since some of the bands had to trim their sets to make sure we got to enjoy everyone, we're keeping the party going with a second event!
This 21+ event at the fabulous Elkton Music Hall will feature 4 bands, 2 DJ's, and a whole lot of fun.
Michaela ("Mickey") Merrill is 10 years old and suffers from Sanfilippo Syndrome (also known as MPS III), a terminal genetic disorder often referred to as Childrens' Alzheimer's. Mickey is a bubbly, delightful little girl with a big belly laugh and a giant smile she shares with everyone. She loves music, frozen yogurt, and most of all snuggles!
Michaela was a happy, seemingly quite healthy baby. As the disease progressed, however, she began to lag behind developmentally, especially in speech. Doctors found out she has hearing loss and is nearsighted, and ran tests to see if these issues were related. The testing unexpectedly discovered that she has Sanfilippo. Mickey has subtype-A which is the most common and also, unfortunately, the most severe.
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, with an average age of death of only 15 years old. Even at her young age, Mickey can no longer speak words, and receives much of her nutrition through a feeding tube.
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. With the degenerative nature of this illness, time is precious.
Since MPS-III is a rare disease- only 1 in 70,000 births- much of the research that has been done has been privately funded by dedicated groups of parents. We are raising funds to contribute to find a cure and treatments for Michaela and all kids like her who have this terrible disease.
Thank you for taking the time to read Mickey's story and help us on this journey. Please check back soon for updates!
Thank you! Your support and contributions will enable us to fund research to find a cure and Save Mickey!
Thank you in advance for your help!
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Wilmington, Delaware