Tremont residents rally around boy with rare blood disease ...
TREMONT - Local residents are rallying around a 9-year-old boy who has been diagnosed with a rare blood disorder and are seeking donations for a fund to assist the family of Silas Harper, fourth grader at Tremont Consolidated school.
“As the Harper family supports each other and their son in this impossible circumstance, I think that we as a community can and should band together to help hold them up and do what we can,” said resident Cindy Lawson, whose son Tom is one grade behind Silas. “If you are interested in contributing to the Silas Rocks Campaign to help support the Harper family with medical, travel, and other expenses related to his treatment it would be greatly appreciated. “
In an email, Amy Silas wrote, “I have written this 10 times. The more I write the more real it becomes. I am the mom of a sick kid. Chris is the dad of a sick son. Addison is a sister of a sick brother. That, unfortunately is the reality we have to get used to in a very short period of time.
“Silas has been diagnosed with a very rare blood disorder called Evan’s Syndrome. It is not a disorder you can see or touch. We wouldn’t have known if we hadn’t started questioning the excessive bruising. This disorder can be manageable if and when they can find the primary reason that caused the disorder, this has been the challenge that Silas’s doctors have faced. We have no idea what has caused this to happen to Silas.
“Silas has taken each new experience into stride. He has listened to the doctors speak and asked questions about his illness as he internalized the concepts of his new reality. A reality of endless blood draws, IV flushes, bone marrow biopsies, ultrasounds and EEG’s... he learned why they were needed and how they would be doing them. Everyone was amazed by his bravery and wisdom.
“The course of action the doctors in Bangor have chosen to take is high-dose steroids. This has helped his platelets increase and for that we are grateful. The high dose of steroids have caused Silas a lot of sleepless nights and a significant increase in appetite.
“After having the opportunity to speak with a hematologist in Boston, Chris and I are planning to have Boston Children’s Hospital assess Silas and his disorder. We feel fortunate that Boston wants to help Silas.
“The thought still scares Chris and me. We both would walk to the end of the earth for both of our children. We both would fold everything we had to make sure they had health, happiness, and security.
“Silas is not defined by this disorder, but our lives are dictated by it until we have a better handle and understanding of his path.”
Contributions by cash or check may be dropped off at any First National Bank location or mailed to:
SILAS ROCKS CAMPAIGN
THE FIRST NATIONAL BANK
SOUTHWEST HARBOR
P. O. BOX 86
SOUTHWEST HARBOR, ME 04679