Mikal Sue’s Miracle Run Will Fight Sanfillippo Syndrome this Weekend in Warsaw [INTERVIEW]
Mikal Sue’s Miracle Run will be held on May 3. Mikal Sue is a seven year old girl diagnosed with a neurodegenerative disease called Sanfilippo Syndrome.
Sanfilippo is a genetic disorder where a defective gene must be passed down from both parents. Mikal is lacking an enzyme that breaks down the sugars we make naturally and causes these sugars to build up over time. As the sugars accumulate in her body, she loses more and more skills. The syndrome causes significant neurological symptoms, including severe intellectual disability. IQs may be below 50.
Most persons with Sanfilippo syndrome live into their teenage years. Some patients live longer, while others with severe forms die at an earlier age. She will eventually lose the ability to walk and communicate. Soon she will lose the ability to swallow and will end up spending her days in a wheelchair or bed. There is no treatment or cure.
The folks behind Mikal Sue’s Miracle Run want to help little Mikal and other children and families affected by this unfortunate disorder. Jennifer Bese with the group came by the studio to tell us a little about Sanfilippo, the run and the beautiful little girl that inspires it all.
Mikal Sue’s Miracle Run will be on May 3 beginning at 9:00 a.m. It’s a 5/10k run, 2 mile walk on Drake Harbor in Warsaw. Registration begins at 7:30 a.m. and continues until 8:30 a.m. The race begins at 9:00 a.m. Pre-registration is $25, day of registration the price goes up to $30. They will have snow cones, food, games and fellowship. Bring the whole family.
For more information, call 66-723-3360. Money raised goes to fight Sanfilippo Syndrome (MPS IIIA). Find out more by visiting their website, their Facebook page, or email John at firstname.lastname@example.org. Let’s all pitch in and help this little girl and others like her shine a little brighter.