The Boston Marathon: Brave and beyond

Brave. It’s the word inscribed on the simple band Mary Tremper wears on her left wrist. The band is a reminder from her son Shane that she possesses the strength and courage to bravely face the future.

When Mary, a Boston Children’s Hospital Miles for Miracles runner, found the band in the hospital gift shop she knew it was from Shane. And as Mary has shared her son’s story with her teammates and listened to theirs, they have redefined brave, together. A few of their stories, including the Tremper’s, follow.

Brave: Remembering Shane

NICU
Shane in the Boston Children’s NICU.

“I run for Shane. I run because he can’t. I run because I can. I run for Shane.” This is Mary Tremper’s mantra.

Shane, born May 6, 2016, was the Tremper’s second beautiful baby boy.

The day after his birth Mary and her husband Jamie learned Shane had a large mass in his brain. Two days later, a team of specialists told the Trempers their son would not recover.

Mary and Jamie vowed to make the most of Shane’s life however long or short it would be. Mary nursed Shane, Jamie snuggled him. They invited friends and family into the NICU. After Boston Children’s staff supported their decision to take Shane home, Mary, Jamie and big brother Owen tackled a family fun bucket list — the beach, the zoo, a barbecue.

Several weeks later, they returned to Boston Children’s for Shane’s final moments.

At times, Mary was crushed by grief. “When he passed away, I didn’t know what to do with myself. My head was swirling every day. I felt hurt and lost and broken.”

One day, she went for a run, trying to relax in the moment. The next day she ran the same loop again. And again the day after that. And again and again. Pretty soon she was running a mile. Then two. It was a distraction and a way for Shane’s bucket list to go on. Go for a run in the rain. Go for a run in the woods. Train for and run in a race.

But despair crept in and hung on.

Then Mary learned about the opportunity to run the Boston Marathon for Boston Children’s. “Could I run for Shane?” she asked herself.

The answer is a resounding yes. Training for Boston has helped Mary reset her mind and re-ignite her spirit. Long before Marathon Monday, Mary has seized victory. In his short life, Shane brought people together, quietly reminding everyone who met him to appreciate the moment. And now Mary is doing the same, following in Shane’s footsteps and honoring his life.

Sophie’s lungs: From foe to ally

Sophie Barry, one of the youngest runners on the Miles for Miracles team, doesn’t remember the severe Respiratory Syncytial Virus (RSV) that landed her in the Boston Children’s ICU, hooked to a ventilator, shortly after birth. For Sophie, her battle for life is a story. For her family, Sophie’s diagnosis was all too real.

Boston Marathon
From left, Sophie and Anna before they discovered their shared passion for running.

“Sophie fought to breathe every day,” recalls her older sister Anna. Sophie persevered, aided by a team of doctors and nurses. Ten years later, at age 11, with Anna by her side, she discovered running. Sophie, always a fighter, vowed to run a marathon … someday.

Another eight years after Sophie’s promise, Anna approached her sister with a plan to run the Boston Marathon together as Miles for Miracles teammates. Through seemingly endless training miles, their legs have grown stronger, their bond even tighter. And Sophie has tapped a strength that once seemed impossible. She says, “My lungs used to be my greatest foe; I turned them into my favorite ally.”

Brigid’s marathon

On April 17, two-year-old Brigid Barden will be waiting for her mom Melissa at mile 23.

She’ll look like another vibrant toddler enjoying all the things toddlers should. “To look at her you would never know the adversity and miles her body has endured,” says Melissa, “But under her shirt are scars that tell the story of her marathon — a reminder that determination, resilience and courage in the face of adversity are the true meaning of victory.”

Boston Marathon
Melissa Barden gets ready for a 21-mile training run.

When Brigid was born with congenital cytomegalovirus (CMV), specialists told Melissa and her husband the upcoming months would feel like a marathon. CMV can cause hearing loss and developmental delays as well as affect the liver and spleen. Brigid’s first months were filled with infections, tests and jaundice. “We wondered if her small body could endure all it would have to face,” says Melissa.

When Brigid was five months old, a biopsy showed CMV had irreparably damaged her liver. She would not survive without a transplant. One week later, Brigid received her new liver. “Three days after surgery, we saw a smile that literally lit up the room.”

Though the next months were filled with appointments, IV medications and therapies, Brigid stayed the course, even battling through acute rejection of her liver. But a little less than one year after transplant, she became very ill with a respiratory virus.

The Bardens brought her to the Boston Children’s Emergency Department. They felt completely defeated.

But everything shifted when a nurse who had treated Brigid the year before expressed her amazement at how healthy Brigid looked. Over the next several hours, staff trickled in to see how far Brigid had come. And with each person who came into the room Melissa’s spirits rose.

That infection led to respiratory distress and another ICU stay, but Brigid rallied and pushed through.

“It’s ironic how much her life has paralleled running a marathon,” says Melissa. And now as Melissa prepares to run a marathon of her own, she says, “Being part of this team is a constant reminder that rewards will come but only through enduring the struggles along the way.”

Learn more about the Boston Children’s Miles for Miracles program.