For many people, running the Boston Marathon is a way to challenge themselves. But for three special Boston Children’s Hospital families, the marathon also provides an opportunity to celebrate the journeys of their extraordinary children who have overcome many obstacles to be able to cheer on their parents to the finish line. Meet Natalie, Brigid, and Nolan.
Natalie Leach is a little girl with a big dream: the 4-year-old hopes someday to run the Boston Marathon with her mother, Ruth. “When I think back to when she was first born, I didn’t even know if she would live, based on what we were being told. And now I have this amazing child who says she wants to run with me,” Ruth says, her voice trembling with emotion at the kaleidoscope of memories — both good and bad — that have made up Natalie’s journey.
Natalie’s experiences ultimately prompted Ruth to join Boston Children’s Miles for Miracles Team the past two years to give back for everything the hospital has done for her family.
An unexpected diagnosis
Following a healthy pregnancy, Ruth and her husband, Jeff, were shocked to learn that Natalie was in complete liver failure a few days after her birth in June of 2015. Doctors were unable to determine the cause of Natalie’s liver failure, ultimately attributing it to a genetic fluke. At just 10 days old, Natalie became the youngest child at Boston Children’s to undergo a successful liver transplant.
Although there were times when Ruth and Jeff felt overwhelmed during Natalie’s recovery, they say that they always knew Natalie was a fighter and believed she would be healthy. “We feel fortunate that she has had only a few post-surgery complications and no rejection episodes,” Ruth says. In fact, today, Natalie is doing very well, attending preschool, performing in her first dance recital, and meeting — or exceeding — all of her milestones.
For Ruth, running the Marathon has provided a way to thank Boston Children’s, while helping other children have access to potentially life-saving care. In two years, she has raised more than $30,000 for the hospital.
Running also allows her to celebrate Natalie’s resilience. That’s why, on a chilly damp day this April as Ruth pushed herself to make it through 26.2 miles of winding roads, she kept her eyes peeled for Natalie, who was waiting at the Boston Children’s viewing station located around mile 13, cheering on her mom and dreaming of someday joining her.
Another child watching the runners from the sidelines along the marathon route was Brigid Barden, who is almost 4. Brigid was perched with her older sister Rori at mile 24, just shy of the finish line, waiting for both of her parents to cross the milestone.
Her parents, Melissa Dwyer and Laurence Barden, were drawn to run as a way to give back to Boston Children’s for providing lifesaving care and support to Brigid through a host of severe health crises she has had to overcome since her birth in July of 2015.
Coping with CMV
“Brigid was born premature with congenital cytomegalovirus (CMV),” explains Melissa.
Some people with CMV never have any symptoms; others can experience deafness, blindness, hearing loss, and developmental delays, as well as damage to the liver and spleen.
For Brigid, her first few months were filled with jaundice and infections, a feeding tube, irreversible liver damage, and hearing loss. She spent 79 days in the Neonatal intensive Care Unit (NICU), and ultimately required a liver transplant at 5 months of age, followed not too long after by a cochlear implant in one ear, then in the other.
Brigid’s path was a rocky one, including rejection of the donor liver and serious illnesses, yet she has fought her way through everything. Today, after overcoming many health obstacles, she is thriving.
A way to say ‘thank you’
“For us, running the marathon for Boston Children’s is a given, since Brigid wouldn’t be here without them. It’s impossible to find a way to say thank you enough,” Melissa says.
Running is also a way to celebrate Brigid and the determination she has demonstrated throughout her young life.
Melissa has run each year since 2017 and was joined by her husband in 2019. Together, they have raised more than $66,500 for Boston Children’s. And while the first year Melissa ran Brigid wasn’t healthy enough to brave the crowds at the race, Melissa was thrilled that last year and again this one, Brigid was able to be there, cheering on the runners.
Nolan Lane and his twin brother Nicholas, along with big sister Adrianna, were also at the Boston Marathon finish line, rooting for their mom Sabrina, who was running the course for her first time. She was running for Nolan, whose path has been even longer, steeper, and more winding than any of the roads and hills of the route that challenged Sabrina’s endurance.
When she felt tired as she ran, thinking of Nolan’s perseverance helped push on Sabrina, just as Nolan has pushed on through many challenges and setbacks.
A path filled with challenges
Nolan and Nicholas were born in October of 2010 with a rare disease called Alagille Syndrome, a genetic condition that can affect the liver and other organs. While Nicholas’ health improved over time, Nolan’s status rapidly declined. His bile ducts weren’t working well and he was diagnosed with failure to thrive. As he grew, he developed rickets, which caused gross motor delays and made him susceptible to breaking bones easily. At age 5, he was listed for a liver transplant, but before an organ became available, he fell down a flight of stairs and required emergency brain surgery.
Finally, after he recovered and a liver became available, he underwent a transplant. Initially he was doing well post-surgery, but within about six weeks, he tested positive for mono from the donor liver. Since Nolan’s immune system wasn’t functioning, the mono led to lymphoma, which is cancer of the lymph nodes. He was admitted to the hospital for a month and began chemotherapy treatments.
“The doctors had to find the right medication balance to help Nolan fight the cancer without rejecting the liver,” Sabrina explains. They ultimately found the best equation, and the cancer went into remission almost three years ago. In the process, though, the chemo caused hearing loss and affected the optic nerves. But still, Sabrina says Nolan is fortunate. He has been able to go back to school full-time this year and is finally able to do many of typical childhood activities, like biking, skiing, and playing in the park with his friends.
Finding ‘normal’ again
For Sabrina, this year also marks the first time in many that she can focus on herself. That’s why the idea of training for the marathon — and raising funds for Boston Children’s to show her appreciation — appealed to her so much. She raised more than $17,000, exceeding her goals.
Sabrina also points out that an unexpected benefit of being part of the Miles for Miracles team is meeting other transplant parents like Melissa and Ruth, who have been through similar experiences and can truly understand the challenges and the victories.
But the best part was knowing that Nolan was in the stands at the marathon, inspiring her every mile along the way. “Nolan’s story has been hard, but the good thing is that it has a happy ending,” she stresses.
Learn more about the Liver Transplant Program.
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