Heather's Our Hero

I am a 6th grade student in upstate New York.  This year at school we were given a passion project to do on anything we wanted.  My Aunt Heather passed away way before I was born from a disease called Sanfilippo Syndrome.  I wanted to learn more about it and her.  After researching I found there still is no cure for this disease so I am raising money to help with research.  My Aunt Heather was  diagnosed with Sanfilippo Syndrome Type A (MPS III) at the age 3 ½.  At first, Heather was just like any other child.  She had the biggest smile which would make anyone’s day.  She enjoyed riding her tricycle and taking her dog Ginger for walks.  She loved spending time at the beach and eating peanut butter and jelly sandwiches.  She also loved dancing to the song Cecilia by Simon and Garfunkel. As she got older, her symptoms increased and her ability  to do things for herself got less and less which resulted in her needing 24-7 care. She no longer recognize her parents or her siblings.  Heather passed away a week before her 17th birthday due to complications from pneumonia.  Please help me with reaching my goal of $2000 to support research for this disease.  Donations will be given to The National MPS Society.  The National MPS Society is a non-profit organization dedicated to acting as a support group for families affected by mucopolysaccharidoses (MPS), mucolipidosis (ML) and other related disorders; increasing professional and public awareness; and raising funds to further research into such disorders.  Thank you for your support.   Drew


  • Lauren Robinson
    • $100 
    • 5 yrs


Drew Johnson
Marcellus, NY

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