Mom Of Twins With Rare Disease Runs Boston Marathon, Gives Back To Children's Hospital
BOSTON (CBS) - She is a mom on a mission. After Sabrina Lane's twin boys were diagnosed with a rare liver disease, multiple health issues kept bringing the family back to Children's Hospital. So on April 15th, Sabrina will line up in Hopkinton as part of the Miles for Miracles Marathon Team.
"I didn't realize this was something I could actually do," Lane said. "It made me believe in myself."
She's been an occasional runner, but this will be her first marathon. It's her way of giving back to Children's Hospital, for all it's given her.
Eight year-old twins Nolan and Nicholas were born with Alagille Syndrome; a liver disease that can prevent other organs from developing the way they should.
"Nolan ended up having the worst of the symptoms," his mom said, "and was hospitalized several times over the course of a few years."
The little boy remembers clearly how hard it was. "I got tired, and I broke bones a lot. I couldn't run really fast; I couldn't do the monkey bars," he said.
Nolan needed a liver transplant, but that was put on hold when he fell down a flight of stairs. He had to be airlifted to Children's Hospital for emergency brain surgery.
Finally – seven months after being listed – Nolan got his new liver. February 5th, 2016. They celebrate that day as Nolan's "liver-versary".
"We eat cake and stay up and watch a movie," Nolan says, smiling ear to ear.
But their celebration was short-lived. Just four months after his transplant, Nolan was diagnosed with lymphoma. But after chemotherapy and multiple surgeries at both Dana Farber and Children's Hospital, Nolan is in remission.
"I feel stronger, I can run faster and I don't get as tired," he said.
In fact, it sounds like Nolan is making up for lost time.
"I like basketball. I like to wrestle with my brother… and I like to go to school, and going up the ski lift with Nicholas and then going down and trying not to fall," Nolan said. "I'm a super good skier!"
For that, his mom is forever grateful to Children's Hospital.
"There's no better hospital. No better doctors. No better nurses. It truly is a place of hope and I always knew going in there that we were going to be OK, and Nolan was going to be OK."
All that time spent in the hospital has given Nolan an idea about what he wants to be when he grows up. "An anesthesiologist," he says. "They put people to sleep for their surgeries so you don't have to feel it."
For Sabrina, this run is as much for her as it is for Children's Hospital.
"I had been taking care of Nolan and Nicholas and our family for so many years, and this was something that I need to do for me," she says.
Nolan is his mom's patient partner, and he'll be out there cheering her on, with brother Nicholas and sister Adrianna.
"I think she's awesome, that she's running 26.2 miles," Nolan said. "I don't know how she's going to do that. Awesome!!"
