Trick or Treating Brought to Girl with Rare Disease

On Tuesday night, children hit the streets for their Halloween candy quest. Because of her rare disease, Emily Sawyer, had to stay in. But that didn’t stop the community from dressing up and bringing the candy loot and Halloween spirit to Emily’s room.
Emily suffers from an extremely rare degenerative disease called MPS III, also known as Sanfilippo syndrome, where the body lacks a crucial enzyme required to break down strings of sugar molecules. This leads to a ton of neurological and developmental issues. To learn more, click here.

Diagnosed at the young age of 3, Emily is among only two children in Indiana with this disease. As a result, she has issues walking, talking and doing all the normal things kids should be doing. She eats through a feeding tube and has learned sign language in order to communicate. Soon after, she lost the ability to walk and now has to use a wheelchair.

She goes to school as much as she can, but has managed to build a community of supporters all the same. Her fans decided to organize the trick or treating night for Emily, who always loved the spooky holiday. Surrounded by Halloween love resulted in Emily’s iconic smile.

Emily’s mother, Angela, knew she could never organize something like this on her own and is forever grateful and inspired for the community’s support of her daughter.

“You want to know that the community still cares for your child even though she’s not out in the community so much anymore,” said Angela in an interview with the Kokomo Tribune. “So when somebody comes and has been with you since kindergarten and says, ‘We’re going to do it for her,’ it makes you feel good inside.”

It’s hard for Emily’s parents, Angela and Keith. They worry about her condition that is gradually getting worse. They cherish the memories of a crowd pleasing Emily who owned every room she walked into.
Emily was surrounded by toys, balloons, and other gifts, all brought to her by former teachers and even her bus driver. Angela and Keith were overwhelmed by the crowds of people visiting their daughter. That spooky Halloween night, there were no worries. There was just festive orange and black love.

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