Crystal White started running about seven years ago to help ease the anxiety attributed to a rare liver disease that inflicted her daughter, Tigerlily.
“At the time, I just needed an outlet,” said White, 39, who grew up in Winthrop but lives in Falmouth. “The anxiety had built up over the years. I needed to do something. It was hard. So I did a little bit here and there, mostly just some (5-kilometer) races on my own. I just kept running.”
Additional Photos
White hasn’t stopped, and on April 16 she and her sister, Heather Peel, 37, will run the Boston Marathon in honor of Tigerlily, 11, who suffers from the disease biliary atresia, a life-threatening disease that affects the bile ducts.
According to the American Liver Foundation, most children with biliary atresia won’t live beyond age 2 without successful treatment.
It has been 10 years since Tigerlily received part of her mother’s liver, a transplant that ultimately saved her life.
Peel and White will run the Boston Marathon to celebrate the milestone.
“This year is such a big year,” says White, who graduated from Winthrop High School in 1991. “It’s a huge milestone. To be 10 years out is just huge. The medicines today are better; there are less side effects. Ten years ago we didn’t discuss 10 years out. We didn’t have those conversations. They said you have to get through the first year first.”
The family did, and not long after, they forged a strong relationship with the American Liver Foundation and its Run for Research program.
The organization paired up patients with runners to help put faces to the fundraising cause.
“They wanted to give them stories to share with their fundraising efforts,” White said. “They wanted to put faces with the disease. After a few years, they convinced me to do it.”
White first ran the 7-mile Falmouth Road Race four years ago on Cape Cod. She was paired with Tigerlily.
“It really helped promote the cause,” White said. “From there it was, why not try a marathon? So, two years ago, I ran my first marathon.”
This year, to mark the transplant anniversary, White will run the Boston Marathon with her sister Peel, of Fayette.
The sisters reached their goal of raising $4,000 for the American Liver Foundation.
People can donate by visiting www.runningfortigerlily.com.
“Two years ago, I ran the marathon and I pulled my Achilles,” White said. “I was petrified. I did it on my own. I didn’t have anybody. It’s easier now to train with somebody, especially when you have the hard days. The long runs are so long.”
Added Peel, who’s never run a marathon: “I knew I could do it if my sister could do it. It’s been challenging but it does get easier every week. It’s easier every week. This year we’re celebrating. Crystal started the drum roll and I thought I should run this with her. She deserves to have someone run beside her. It’s a big year.”
More than 20 years ago, children diagnosed with biliary atresia rarely lived beyond their second birthday, let alone 10.
Tigerlily, who received the liver transplant shortly after she turned 1, is a sixth-grader at Falmouth Middle School.
“To get this far is pretty cool,” she said.
Tigerlily grew up in and out of hospitals, receiving numerous blood transfusions and other treatment.
While there is no known cure for the disease, each year brings more hope.
“For her, it’s forever,” White says. “A little cold can turn into something much bigger. There are still challenges moving forward, but in some ways we are in uncharted territories now. It’s a big unknown. It’s great, too, because every year it gets better. The medicines get better. We just stay proactive.”
White and her sister are near the end of their training. The long weekend runs of 16, 18 and even 21 miles are now in the past.
The sisters will taper off until the marathon.
“Doing this is just really rewarding, because we are giving back,” White said. “We are giving back to a pool that we were taking out of for a long time. It just helps keep things moving forward. We’ve come a long way. It’s quite incredible.”
Bill Stewart — 621-5640
bstewart@centralmaine.com
Send questions/comments to the editors.
Success. Please wait for the page to reload. If the page does not reload within 5 seconds, please refresh the page.
Enter your email and password to access comments.
Hi, to comment on stories you must . This profile is in addition to your subscription and website login.
Already have a commenting profile? .
Invalid username/password.
Please check your email to confirm and complete your registration.
Only subscribers are eligible to post comments. Please subscribe or login first for digital access. Here’s why.
Use the form below to reset your password. When you've submitted your account email, we will send an email with a reset code.