Michaela ("Mickey") Merrill is 4 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. Most of all, Mickey loves to ROCK OUT on the drums!
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, with an average age of death of only 15 years old. 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 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 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 cover medical expenses that her insurance won't, and to travel to wherever in the world we are able to get her into treatment- expenses like passports, visas, airfare, and possibly even the treatment itself.
...For taking the time to read Mickey's story and help us on this journey. Please check back soon for updates!
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