PORTLAND — Friends and family of 26-year-old Ashley Drew gathered Friday to say goodbye to the woman who caught the White House’s attention and blogged about her battle with cystic fibrosis.
About 250 people filled First Baptist Church as her brother Justin Drew played a French horn rendition of the hymn “Amazing Grace” over the open casket. Her parents, Tom and Joy Drew, dabbed their eyes as they listened to friends speak, their voices breaking, about Drew.
Drew died July 25 from complications of cystic fibrosis, an inherited chronic disease that leads to life-threatening infections in the lungs and digestive system. Despite the disease, Drew ran track at Scarborough High School and played the saxophone, piccolo and French horn at the University of Maine in Orono. She graduated summa cum laude with a degree in music education in 2009, taught music at elementary and middle schools in Hampden and Glenburn and pursued a master’s degree at UMaine in instrumental conducting.
While waiting for a double lung transplant, Drew was featured in a video made by the Obama administration about the Affordable Care Act, the 2010 health care reform law also known as Obamacare. The passage of the ACA allowed Drew to stay on her mother’s insurance until age 26.
“If I wanted to get insurance before the Affordable Care Act passed, I feel like I would have just been laughed at,” Drew said in the video, saying the costs of hospitalization and medication would have been prohibitive without health insurance.
Drew and her mother also blogged about cystic fibrosis and the wait for a new set of lungs on the Air for Ashley Facebook page, drawing 2,600 “likes.”
Drew received her transplant last June after spending two years on the waiting list for new lungs. While the transplant was successful, an overload of medications caused complications with her kidneys. She also had a fungal infection that spread to her brain, causing strokes. She suffered two major strokes last week that ultimately killed her.
In a video played during the service, Drew cracked jokes about her gastrostomy tube, a 3-inch tube on the outside of her stomach that allowed her to hook up to a machine and receive calories she needed when she had no appetite to eat.
“I want people to know it’s not a big deal to have a feeding tube,” she said in the video. “And being positive about it makes everything different. I mean, I’ve named mine. It’s my ‘button'; therefore it’s not strange anymore.”
Joy Drew thanked people in attendance for their support as well as the staffs at the hospitals where her daughter received treatment. She also expressed gratitude to the family of the organ donor who gave Drew her lungs.
“Thank you for allowing us another year with Ashley and I hope someday that we get to meet you,” Joy Drew said.
Tom Drew recounted the story of a discussion he had with Ashley after she had given a presentation on the importance of organ donation. When he asked then how she thought it had gone, Ashley replied that it had gone well, as she had made her audience not only laugh and cry, but think.
“There are many moments that we can remember about Ashley’s life to make us laugh, and many moments here that will make us cry,” he said. “And now my job is to make you think.”
He said his daughter wanted to create a nonprofit to help families of cystic fibrosis patients.
“We want to establish an ongoing fund to help defray the costs of double lung transplants,” he said. “First in Maine, then in New England, and hopefully all over the country.”
Karen Antonacci can be contacted at 791-6377 or at: firstname.lastname@example.org