Notre Dame's Purcell battles through rare disease

It is July, and Leanne Purcell is playing summer league basketball with her Notre Dame teammates, working out every day to prepare for her final year of high school. Later that same month, she's the maid of honor at her sister Jaclyn's wedding.

Next, it is Aug. 30, and Purcell is in Ocean City, N.J., with her father, Michael. She's reading Their Eyes Were Watching God on the beach.

But something isn't right; her stomach is bothering her. The pain isn't normal, and it isn't cramping, either.

Now, it's Aug. 31, and Michael takes Leanne to Bryn Mawr Hospital. There, the 17-year old undergoes tests - the first of a series that will soon become routine.

At midnight, Purcell is taken by ambulance to Nemours/Alfred I. duPont Hospital in Wilmington, after doctors have decided something is wrong with her liver.

That Wednesday, the Purcells are told that Leanne has Wilson's disease, a genetic disorder in which copper accumulates in the liver or brain. The disease is fatal if untreated. There are fewer than 20,000 cases in the United States each year, according to the Mayo Clinic.

It's Labor Day weekend, and instead of getting ready for her senior year, Leanne is waiting for a liver donor.

By Sept. 6, she is 1A on the transplant list - a status generally reserved for patients with a week or less to live. The family is in panic mode.

Megan Kienzle had already brought up the notion of donating more than once at this point. She's the girlfriend of Leanne's 22-year-old brother, Brendan.

She decides to take the semester off from Lehigh to give 40 percent of her liver to Leanne.

"What an incredible display of courage and bravery and strength she showed," Michael said.

After the transplant, Leanne is able to get up out of bed and sit in a chair - the doctors and nurses are surprised at how good she is feeling.

But things soon get bad again, as she starts bleeding out. A second operation is needed, in which doctors reconstruct a vein in her leg and use it to fix the hepatic artery, which supplies oxygenated blood to the liver. She'll undergo a third procedure too, one to remove a blockage in her bile duct.

"Every time we went in to visit, the nurses always said she's so strong," Notre Dame coach Mary Beth McNichol said. "We just couldn't believe it. Nobody could believe it. You felt like you were in a dream almost. She was in such critical condition for so long that we just kept praying. She's been remarkable."

The battle still wasn't over.

Leanne's body partially rejected the liver and is resistant to a steroid treatment. The "last resort," according to Leanne, is a thymoglobulin treatment, where antibodies are extracted from a rabbit and administered intravenously.

It's taxing - and boring - as Leanne is stuck in bed 10 hours a day for an entire week. She passes the time by watching Friends, starting from the pilot and finishing the entire series - all 236 episodes.

"The nurses made fun of me," she said, laughing.

Through it all, Michael spends every day by her side, taking leave from his job at an accounting firm to stay with Leanne. He sleeps on the couch in her room and eats in the cafeteria or the food that friends and family bring in droves.

"At one point, it just seemed like anything that could have went wrong, went wrong," her father said.

"So many people would have asked, 'Why is this happening, why me?' " he added. "She never complained. She accepted it and wanted to move forward. It's amazing how she handled the whole thing."

While still in the hospital, Leanne applied to six colleges; she has already gotten into four - Drexel, Loyola (Md.), Scranton, and Villanova. She hopes to major in nursing - something she always wanted to do but feels more passionately about now because of her experience.

"She's just such a good kid," McNichol said. "She always came in with a smile. She's so beloved by the team and the school."

It's December - almost four months after that day on the beach.

Michael texts McNichol, saying Leanne wants to surprise the team. The pair go to a scrimmage and play almost stops when her teammates spot her. Tears fly everywhere.

Leanne will be home in Broomall for Christmas, just like she was able to spend Thanksgiving with her family. She'll also be able to celebrate her birthday on Jan. 4, and if all goes as planned, she'll be returning to school in January for the third quarter.

"Now I'm getting stronger," said Leanne, who has lost 30 pounds. "I go to [physical therapy] three times a week. I feel more myself."

But before that, it is Dec. 12 and Purcell is back on the bench with the Irish, unable to participate but still a part of the team.

The announcement is made over the public-address system during starting lineups.

"Gwynedd Mercy Academy welcomes back to the court, No. 5, Leanne Purcell."

rallysports@phillynews.com