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He’s running the Boston Marathon for his 2 nephews with down syndrome
"I’m running for Sebastian’s memory and for Zachary’s future."
In our “Why I’m Running” series, Boston Marathon athletes share what’s inspiring them to make the 26.2-mile trek from Hopkinton to Boston. Looking for more race day content? Sign up for Boston.com’s pop-up Boston Marathon newsletter.
Name: Steven Ponte
Age: 37
From: Somerville, Mass.
My twin nephews, Sebastian and Zachary, are the reason I’m running the 130th Boston Marathon.
Shortly after they were born, they were both diagnosed with Down syndrome.
Around that time, our family received a care package from the Massachusetts Down Syndrome Congress in the NICU — our first introduction to an organization that would become an important source of support for our family.
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Sebastian and Zachary, along with their triplet sister, Sophia, quickly filled our lives with joy and perspective. They brought our family closer together and helped us see the world in new ways. Sebastian especially had a bright, cheerful spirit that lifted everyone around him.
When Sebastian and Zachary were later hospitalized with life-threatening respiratory infections at Boston Children’s Hospital, the MDSC was there again.
Through its MDSC Cares program, the organization supports families of children with Down syndrome facing extended hospital stays and complex medical challenges.
Our cheerful and confident Sebastian has since passed away, but his impact on our family remains immeasurable. Running Boston is my way of honoring him while supporting families like ours and helping ensure that individuals with Down syndrome have the support and opportunities they deserve.
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I’m running for Sebastian’s memory and for Zachary’s future.
Editor’s note: This entry may have been lightly edited for clarity or grammar.
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