'We've been waiting for it since I was born': Cystic fibrosis drug having major impact on Courtenay child

Maysa Milligan and her family say she received a second chance at life thanks to the drug Trikafta — a game-changing medication for people with cystic fibrosis.

“I’m amazingly grateful for this medication,” said the 11-year-old from her Courtenay home Tuesday. “We've been waiting for it since I was born 11 years ago, more than a decade.”

While Milligan was receiving treatment for cystic fibrosis this August at Victoria General Hospital, she started advocating for B.C. to join the rest of Canada and make Trikafta available for kids ages six through 11.

Shortly after she went public with her campaign, the province advised it would fund the drug for kids starting in September, a commitment that cost approximately $300,000 per child, per year.

Maysa’s first doses of the medication arrived on Oct. 12, and she started taking it on Oct. 13.

Maysa’s mother, Sarah Milligan, says it was important that her daughter not wait any longer than she did before receiving the drug.

“If she had to wait weeks or months longer for Trikafta, it would have been a significant problem for Maysa,” said Sarah Wednesday. “She was in the hospital in August because her body was breaking down.”

The drug is expected to increase both the length and quality of life for those suffering from the fatal, progressive disease.

Less than two weeks after she started to take it, the drug has already improved Maysa’s lung function by 30 per cent. Her appetite and energy have also improved.

“It’s really exciting to have some hope now that we can look forward to her regaining some of the things that she’s lost,” said her ecstatic mother.

Maysa's been home-schooling for the past few years because she has such a rigorous treatment and therapy regime for her cystic fibrosis. Now, however, she’s hopeful she can return to class in person — and have her first ever sleepover at a friend’s house.

“My energy has been quite high compared to what it usually is -- especially during the evenings,” she said. “Lots of, 'Let’s go to bed,' and instead doing cartwheels and jumping on the bed, stuff like that,” she said with a mischievous grin.

The family calls the situation bittersweet. While they’re thrilled Maysa can access the drug now, they wish she could have had accessed the medicine years ago, and note it’s undergoing trials for children 5 and younger, who they hope can access it soon too.

“The longer a person with CF can keep their lungs healthy, the longer lifespan they can expect,” said Sarah.

Still, for Maysa, after waiting all her young life for this medicine, everything already feels so much sweeter.