Sarah Murnaghan Breathing Completely on Her Own

On transplant anniversary, Sarah Murnaghan gets tracheostomy tube removed.

June 16, 2014, 2:12 PM

June 16, 2014— -- Sarah Murnaghan spent the first anniversary of her controversial adult double lung transplant in the hospital this weekend, but she wasn’t sick.

The 11-year-old was getting the tube in her neck, called a tracheostomy, removed -- meaning she can breathe completely on her own for the first time in years.

“She no longer needs any assistance to breathe,” Sarah’s mother, Janet Murnaghan, told ABC News. "She rides her bike, goes to the pool, out to dinner with the family, museums, parks, etc. She is enjoying life."

Sarah rode a bike for the first time post-transplant in March.

Find out how many children benefitted from the Under-12 Rule tweak.

Read what experts had to say about fairness of the Under 12 Rule last year.

Clutching a pink teddy bear and smiling for her mother’s camera, Sarah showed off the bandage on her neck.

“This is the best one year anniversary picture I could ever imagine sending to you all,” Janet Murnaghan wrote on Facebook. “Thank you to our many supporters whose voices helped make today possible.”

Last year, Sarah was dying of cystic fibrosis, a genetic condition that affects cells that produce mucus, sweat and digestive fluid, and she needed a lung transplant to survive.

The Murnaghans successfully fought the so-called Under 12 Rule, which they said was discriminatory because it was preventing Sarah from receiving an adult lung transplant. Under the rule, children under 12 years old are given priority for child lungs, but adult lungs must be offered to adult matches on the transplant waiting list before they can be offered to children.

Their campaign, which included a petition and a lawsuit against Department of Health and Human Services Secretary Kathleen Sibelius, allowed Sarah to have two entries on the lung transplant waiting list: one with her real birthday and one with a fake birthday to make the system treat her as a 12-year-old.

Sarah received two lung transplants last June at the Children’s Hospital of Philadelphia because the first one failed. The successful transplant happened on June 15.

Although the Organ Procurement and Transplantation Network voted to keep the Under-12 Rule, it made a slight tweak to it, allowing for children to be considered for exceptions on a case-by-case basis. The tweak expires this summer, and the OPTN board will vote next month on whether to make it permanent.

"Organ donation is a precious gift," Janet Murnaghan told ABC News. "We plan to honor this gift with excellent care and a full life to come."

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