Ashley Drew, a musician from Scarborough who inspired the University of Maine football team and caught the attention of the White House during her struggle with a genetic lung disease, died Thursday. She was 26.

Drew was born with cystic fibrosis, an inherited chronic disease that leads to life-threatening infections in the lungs and digestive system. Despite her illness, she ran track at Scarborough High School and played the saxophone, piccolo flute and the French horn at the University of Maine in Orono. She earned a degree in music education in 2009. She taught music at elementary and middle schools in Hampden and Glenburn, where she had a long-term substitute teaching position.

“She never let her CF define who she was,” said her father, Tom Drew, of Scarborough. “She loved her family. She loved her friends. She loved teaching and her music. Most of all, she loved the Lord.”

Drew’s condition worsened in her 20s while she was pursuing a master’s degree at UMaine in instrumental conducting. She was hospitalized repeatedly and placed on the transplant list on Dec. 17, 2010.

While she was waiting for the lung transplant, Drew gained national attention during the debate on the Affordable Care Act, the 2010 health care reform law also known as Obamacare. Last year, she became the poster child for one of the law’s most popular provisions: a requirement that insurance companies cover dependent children until they turn 26 years old. She was featured in a video posted online by the Obama administration talking about the Affordable Care Act. In the video, she referred to the law as “Ashleycare.”

Passage of the law meant that Drew could stay on her mother’s health insurance to cover most of the cost of the life-saving and expensive surgery.

Drew underwent a double lung transplant on June 8, 2012, at Brigham and Women’s Hospital in Boston. At the time of her transplant, her lung capacity was reduced to about 14 percent, said Mark Maroon, a close family friend.

“She spent most of her life gasping for air, being slowly suffocated,” Maroon said. “I can’t imagine that. It had to be terrifying for her. When she got her new lungs, it was so exciting for her. She didn’t have to fight for every breath.”

The transplant was a success, but an overload of medications caused complications with her kidneys. She also had a fungal infection that spread to her brain and caused strokes. She suffered two major strokes last week that ultimately killed her.

Drew’s faith sustained her throughout her life.

“She loved the Lord with all her heart,” said her mother, Joy Drew. “She climbed up on my knee when she was 7 years old and asked how she could be sure that Jesus was in her heart. We talked about it and she prayed with me and she knew he was there. She lived her life that way.”

Drew was remembered by family and friends Friday as a strong, vibrant and determined woman who inspired thousands of people through her struggle with cystic fibrosis.

For the past two years, Drew chronicled her life with cystic fibrosis, and her life before and after the transplant, on a Facebook page, Air for Ashley. As of 5:45 p.m. Friday the page had 2,531 likes. More than 150 people commented on her family’s post about her passing.

Drew inspired members of the University of Maine football team when she met them after a scrimmage in May 2010. The team held many fundraisers to help defray her medical expenses.

Chris White, a UMaine professor and director of sports bands and the symphonic band, said she was an “excellent musician and wonderful person.” Drew and her brother, Justin Drew, attended the Maine Summer Youth Music Camp, which White also directed.

“She was wonderful. She was what you would consider a perfect student. She was eager to learn and loved to play,” White said.

Maroon recalled the night he and Drew came face to face at a Town Council meeting about budget cuts in Scarborough. At the time, she was 17 years old and he was chairman of the board.

“I remember her getting up and I thought, ‘Oh no,”‘ he said with a chuckle. “She spoke so gracefully and eloquently. She talked about how music changed her life and changed her brother’s life. You could tell she was someone that was going to make a difference.”

The Air for Ashley Facebook page will continue her mission to raise awareness about cystic fibrosis and organ donation. Drew’s family plans to establish a nonprofit organization that will benefit families facing the same financial hardships with lung transplant surgery.

Visiting hours will be held from 4 to 7 p.m. Thursday at Hobbs Funeral Home, 671 Route 1 in Scarborough. Carpooling is strongly urged and the Scarborough High School parking lot can be used.

Her service will be held at 10 a.m. Friday at First Baptist Church, 360 Canco Road, in Portland.

Melanie Creamer can be contacted at 791-6361 or at:

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