Meet Harper

Harper came into the world on a beautiful summer day in July, completing her family of five. As a newborn baby, Harper wasn’t getting stronger. Her parents took her to numerous pediatrician appointments and doctors couldn’t figure out what was going on. As time went on, Harper got sick with RSV and was admitted to the intensive care unit at the Stollery. She stayed at the Stollery for almost a week until she was able to be discharged.

After returning home, Harper’s parents noticed that she was getting weaker and weaker. They took her back to the Stollery where the neurology team diagnosed her with spinal muscular atrophy (SMA) type 1. Harper was given two years to live and was immediately admitted into life-saving treatment at the Stollery.

Within two weeks, Harper was given her first lumbar puncture. She spent 16 months at the Stollery where she received multiple treatments and operations that were not curing her disease but slowing down its progression. During this time, a $2.8 million gene therapy was announced and approved in the United States that could stop the disease from progressing. The pharmaceutical company was hosting a lottery and gifting the first 100 eligible kids with a free dose of the medication. While Harper’s family waited for this therapy to be made available in Canada, they applied to the lottery. In October 2020, Harper’s application was selected and she received gene therapy in December 2020.

As pediatric research continued to progress, a third treatment was made available to kids like Harper in the States. Harper’s team at the Stollery took the time to research and determine if this was a good option for her. After collaborating with colleagues across Canada and the United States, they agreed it was. With this third treatment not being available in Canada yet, members of Harper’s team joined her parents and lobbied the government to bring this treatment to Canada for kids like Harper.

Thanks to advancements in research, Harper’s future is bright! She visits the Stollery regularly to keep up with her treatments and her family is grateful to the world-class team for taking care of and advocating for kids like theirs.