Silas Rocks: MDI Community Rallies Around 9-year-old with Rare Disorder
Sounds scary. It is scary. Evans Syndrome was discovered in 1951, so not a long time ago, and there is no definitive cure. Researchers are still learning more and at this point in time the cure is still experimental.
Nine-year-old Silas Harper from MDI was diagnosed with Evans Syndrome in April of this year. Any parent can only imagine what Mom Amy and Dad Chris are going through. In the past few months there have been trips to hospitals in Bangor and in Boston, and those will continue.
Evans syndrome is a rare disorder in which the body's immune system produces antibodies that mistakenly destroy red blood cells, platelets and sometimes certain white blood cell known as neutrophils. This leads to abnormally low levels of these blood cells in the body
Silas and family will be heading back to Dana Farber to see a Bone Marrow Failure Specialist soon. And the specialists all work together, hematologist, immunologist, bone marrow specialist and genetics specialists. Teamwork for Silas and family.
Over the weekend at the Bass Harbor Boat Races and B.B.Q. was held and also a raffle that raised $5,100. It was a great example of community and how we can all come together in times of need and do good things.
There is also a Facebook page called Silas Rocks. That Facebook page is two-fold. There is a Venmo link to help raise funds. And also it is a great place to share your positive messages of hope and understanding for Silas and the family to know that they are not alone, and the community of Tremont on MDI and beyond is behind them.
Silas' Mom Amy gets the last word.
This has been the scariest 9 weeks as a parent. Thankfully Silas is an amazing kid with a heart of gold and a sense of humor and a will to rock.