ROLESVILLE — Brooke Parrish is an eighth-grader who loves to dance, draw and play softball.
She’s an iPad movie-making whiz with a reel of trailers that are spot-on imitations of the action flicks she likes best.
She’s a willowy eighth-grader with long, dark red curls, and will graduate from Rolesville Middle School this spring as an honor roll student. She has dreams of California and a career in the movies.
But first, she needs a liver transplant.
For more than two years, Brooke has been waiting for the transplant that will give her relief from the days she spends exhausted and out of breath because of a condition called Hepatopulmonary syndrome.
She was diagnosed in early 2012 after visiting the doctor for what seemed like a bad cold. Doctors soon realized the oxygen saturation levels in her blood were far too low, but it took time to piece together just what was wrong. The syndrome is a liver disease that also affects the heart and lungs.
Once they had an answer, the Parrish family started waiting for the transplant. They make trips every three months to Children’s Hospital in Pittsburgh so that Brooke’s doctors can monitor her health.
Lately, Brooke needs to bring a small oxygen tank to school each day so she can keep up with her classes. Sometimes she’s still too tired to finish out the day.
Several months ago, she had to give up softball and dance. She no longer could draw the breath she needed to perform and play safely.
It’s a setback, but one Brooke expects to overcome.
“I don’t like it, but I understand,” she said. “I’ll get back to doing everything when it’s all over.”
Waiting for the call
When it’s all over starts when the call comes that she has reached the top of the transplant list.
She and her family will have just hours to get to Pittsburgh. Multiple companies that provide medical flights are on alert, ready to fly them the instant they’re ready.
Everything is in place. The waiting is still agony.
“We didn’t think it would be this long,” said Brooke’s mother, Charlene Parrish. “Every day you think it’s going to be the day.”
She hopes families will consider organ donation, knowing that it can save someone’s life.
To help ease the Parrish family’s financial burden, a group of friends have formed a fundraising team called Brooke’s Buddies. They’re hoping to raise $60,000 for the Children’s Organ Transplant Association in honor of Brooke.
The funds help to defray transplant-related expenses for children like Brooke. It’s money she will be able to access for the rest of her life to pay for medications, doctor appointments and other expenses related to the transplant.
On June 21, Brooke’s Buddies will hold a family fun day at the Rolesville Town Hall with dancing, games, a raffle and a silent auction, the first in a series of events to help them reach their goal.
“This can be a good way of giving back and being grateful for what you have,” said Jeanette Whalen, a friend of the family who has helped spearhead the effort.
The Parrish family has already lost a son, Gregory, who died in 2006 at age 12. He had neurofibromatosis, a genetic disorder that caused brain tumors and robbed him of his vision. Gregory was a devoted fan of N.C. State’s basketball team; the players and coaches grew to know and love him.
Whalen said she had to act after watching the Parrish family deal with the news that they had to confront yet another grave illness for another child
“I just felt I had to do something,” she said.
Brooke said her family and her doctors help her understand that her condition isn’t the same as Gregory’s. Talks with her friends and family, including her two older brothers, help her through the tough times.
“It’s a little scary, but I’m fine with it,” she said.
Brooke’s father, Gary, said he’s proud of how hard Brooke has worked to keep everything in her life as normal as possible while never asking for any special treatment.
He knows the family has no choice but to wait to see what happens next. He’ll be glad for the day when he doesn’t check his phone constantly for news from doctors.
“We just have to ride it out,” he said.
Barr: 919-836-4952; Twitter: @barrmsarah