MDI community rallies behind 10 year-old fighting rare syndrome
SEAL COVE, Maine (WABI) - 10-year-old Silas Harper of MDI was diagnosed in April with Evans Syndrome.
It’s a rare disorder in which the immune system destroys red blood cells, platelets, and often certain white blood cells.
Evans Syndrome is so rare in 10 year old children like Silas Harper of Tremont, that there simply isn’t enough information for him and his family to think about the future.
“We don’t know,” said Sials’s mom Amy. “The doctors don’t know. We have no idea, and that’s the hardest part for all of us.”
“Every case is so rare, we’re all being educated as we go. Us as well as the doctors, I think,” added Silas’s dad Chris.
While there is no known cure for Evans Syndrome, Silas has the next best thing; overwhelming support from a community that’s raised more than $20,000 in less than three months since his diagnosis, through the Silas Rocks Campaign.
“Word spreads in a small town, especially when it’s a child involved, and such a cared for child,” Chris said. “The messages started pouring in. Everyone that’s heard about this has reached out to us. It’s been amazing.
On a June trip to Boston Children’s Hospital, people in the MDI community lined the streets along his route in a show of support.
When he returned home, his classmates loaded the bus, and took a field trip to come see him.
“I’m at a loss for words with this,” Amy said. “You literally see this island come together and stand behind and stand next to their members of their community, and that’s what they’ve done for Silas.”
Silas and his family still have a long way to go in fighting Evans Syndrome. But Silas’s dad said that the fight is made a least a little easier knowing they aren’t fighting alone.
“We never expected to be in this position, but people have banded around us and we’re forever grateful.”
For more information on Evans Syndrome or to donate to the Silas Rocks Campaign, visit the Silas Rocks Facebook page.
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