Category: Stories

Emma is one of the 500+ kids waiting for Trikafta. She has had 6 admissions in the last 12 months and her family are pleading with the government to list Trikafta without delay. Each hospital stay is especially difficult for Emma and her family as she lives 4.5 hours from the hospital. Taking her away…

Oli has always appeared to be a picture of health but inside, he is fighting a big and unpredictable battle against Cystic Fibrosis. One Trikafta could help arm him against. Last year, Oli caught a ‘cold’ that he was unable to shake off. Over many months his parents watched him steadily decline to the point…

Stories like this show exactly why Trikafta needs to be funded urgently. Mark Butler MPVertex Pharmaceuticals, please list Trikafta without delay so kids like James can spend less time in hospital and more time being a healthy kid. ‘Currently on our third day in hospital with DIOS (distal intestinal obstruction syndrome) which is a common…

Young Wade is one of the 500+ kids waiting for Trikafta. Since June last year he’s spent 5 months on IV antibiotics. Two different harmful lung bacteria mean his current treatments involve injections and four antibiotics, on top of the nebulisers and physiotherapy to clear the constant mucus. His lung function is just 51%. His…

Meesha is fortunate to have been on Trikafta for the last 4 months, after being accepted on the compassionate program. For the last few years she has been very unwell and missed most of grade 2. Her lung function dropped as low as 32% and she was 95% tube fed, not eating anything most days.…

As we wait for the outcome on Friday, we thought we’d share Maddi’s heartwarming story. Maddi was 11 years old with a lung function of 24%, under palliative care. She was on Insulin, Bipap, overnight feeds, many medications and not able to receive a transplant. She missed out on a lot of school and activities…

Aaliyah is fortunate to have compassionate use of Trikafta. All of last year she was very unwell. She would finish hospital admission and a few weeks later, sick again. Her lung function dropped below 40% in June and she started on oxygen at night. Trikafta has been a miracle for us. Since starting on Trikafta…