Evan is 11 years old and has Sanfilippo syndrome. He was diagnosed in August, 2008 after 4-1/2 years of searching for answers to his mental and physical decline. Evan originally reached many milestones as a baby. Then, as a toddler, we began to notice developmental delays. Although he was a very active little boy, he babbled constantly and had many recurring visits to the Doctors for ear and respiratory infections.
Evan does not talk anymore and requires frequent rest periods throughout the day. He is still very active and needs to be closely supervised. Evan can be described as a 4’5”, 80 pound toddler. He is very loving and such a blessing. He teaches us how special life is every day. We know as Evan gets older he will continue to regress because Sanfilippo has no current treatments or a cure.
This year we will be hosting our 3rd Annual Spaghetti Dinner, A Wish for Evan. We have raised almost $20,000 in the past two years for Sanfilippo Research and Family Support programs with the National MPS Society. This year all money raised will be for Sanfilippo Research and to help researchers discover a treatment that might benefit Evan in his lifetime.
For more information about the National MPS Society please visit www.mpssociety.org. Before leaving our site, consider making a difference in Evan’s fight for life with research for Sanfilippo.
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