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© 2019. Sergey Gordeev. New York. All rights reserved.

The Shmulensons participated in the marathon as “spirit runners” – which, according to the rules of the marathon, means that they have raised enough money to participate as part of a charity, but are not actually running.

 

“We posted an ad on Facebook,” said Alexandra, 33, who works as Associate Executive Director of Kings Bay YM-YWHA. “And that is how we told our friends.  We are very private people, and people know that we are not the type to tell everybody and expect them to respond with phone calls, consolations and hugs.  By posting the announcement for this very specific cause, we let them know that if they want to help, they can donate to ‘Run for Our Sons.”

 

The friends and family of the couple responded immediately.  To participate in the marathon, the Shmulensons needed to raise a minimum of $3,000 – and they have exceeded that goal by raising $4,700. 

 

“People gave as much as they could,” said Roman Shmulenson, 34, who works as the executive director of  the Council of Jewish Émigré Community Organizations, a central coordinating body for the Russian-Jewish community of New York.  “A lot of our Jewish friends gave in multiples of 18, which meant a lot – because in Jewish tradition, the numerical value of the letters in the word ‘hai,’ meaning ‘life,’ adds up to 18.”

 

On the outside, Jacob looks like a regular five-year-old sporting a bright-red windbreaker, flowing blonde hair, and a childlike, curious face. However, the disease has already started taking its toll on the boy’s body.  Because of Duchenne, he has difficulty running, climbing, even getting up if he falls.  As he thoughtfully watched the athletes run by, he would hug his dad’s leg, and Roman would take him up into his arms.

 

“Right now he does not yet fully realize his condition,” said his mom, Alexandra.  “But he is starting to understand his limitations, and it’s very frustrating for him.  So we adapted by choosing activities that do not involve things that he cannot do.  No running, no jumping.  Instead, he sings, paints… we go to the museums, we read together – he is a big fan of doctor Seuss.  He is learning to play the guitar…”

 

Roman picks up Jacob again and wades across the fast moving stream of runners to the other side, where the rest of the “Run For Our Sons” group has gathered to cheer for those of its members who are actually running.  This year, 33 of them are in the race, with many more supporting on the sidelines.

 

Kimberly Galberaith, 44, has worked as the head of Parent Project Muscular Distrophy for many years and created the “Run For Our Sons” program in 2005.  She cheers the runners and checks her iPad to see the progress of the group’s runners while summarizing the goal of the organization to a visitor:   “Our mission is to end Duchenne. The organization participates in half a dozen marathons per year, nationwide, in order to raise funds for research that may lead to a cure.  Our goal for this year’s New York City Marathon was $265,000, and we already got $285,000.  I’m sure we’ll get even more after people go home and Tweet about the experience.” 

 

Galberaith suddenly stops mid-sentence and starts cheering:  one of the group’s runners, John Killian, has reached the group.  “Mile 18 and a half, see you at mile 26!” he yells triumphantly, and continues running.

 

Galberaith nods towards a woman standing next to her and says, “that’s Stephanie, John’s wife.  Their son, Sam, is 10.  He also has Duchenne.”

 

Stephanie pauses as she looks into the colorful stream of bobbing heads, flowing relentlessly towards its goal.  Then quietly, almost to herself, she says, “John’s running because our son can’t.”

 

NYC Marathon 2011

Sergey Gordeev for New York Torch published by Columbia Journalism School

 

The annual New York City Marathon is widely seen as a grueling test of athletic prowess.  Roman and Alexandra Shmulenson saw Sunday’s race as something very different:  a glimmer of hope for their five-year-old son Jacob.

 

Earlier this year,  Jacob was diagnosed with Duchenne Muscular Distrophy – a progressive deteriorating disease that causes muscles to atrophy.  The disease affects one in every 3,500 boys and is almost always fatal, with average life expectancy of 20 years.

 

After learning the diagnosis, the Shmulensons turned to an organization called Parent Project Muscular Distrophy  – a nationwide community and support group for parents of children with Duchenne.   The organization has helped point the Shmulensons to some of the best Duchenne specialists in the country and has counseled them through what was a very difficult past several months.  So when the opportunity arose to participate in the  marathon as part of the organization’s fundraising project, “Run for Our Sons,” they jumped at the opportunity.