this is so powerful
Sanfilippo Syndrome is incredibly rare and occurs in around 1 in every 70,000 births. As Roger explains in the video above, the disease affects development and then leads to neurological deterioration, including the loss of the ability to feed yourself, to speak, and to walk. Life expectancy for kids with Sanfilippo is anywhere between 10 and 20 years old and at the moment there isn’t a cure or effective course of treatment for the syndrome.
Blair’s family is raising money for the Sanfilippo Research Foundation and 282 people have already raised over $60,000. You can donate towards the $100,000 target here on Blair’s GoFundMe page.