Michaela ("Mickey") Merrill is 6 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 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. 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.
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. We also raised funds to offset the cost of her care and help us support her as we live far from home for her to participate in a study that could save her life- expenses like travel, health insurance, and medical supplements.
Thank you 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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There are studies approved by the FDA that just need a little bit more funding to get started. We want to get them funded as soon as possible. Thank you in advance for your help!
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