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 as her hospital admissions were so frequent.
After almost 2 years of Trikafta she has a lung function of 58%, no insulin, most meds gone, no blood sugar scanner, and this week her feeding PEG was removed! After having PEG feeds for 5 years, she’s now gained enough weight that this is no longer needed! She has officially become a pubescent teenager. Something I never thought would happen.
Without her compassionate grant of Trikafta I was told to prepare for the worst, to give her a quality of life and do what I have always done… to be there. But now she’s planning to be a teacher or a vet when she grows up! She’s back at school, joined a netball team and hasn’t had any admissions since starting Trikafta!
Maddi’s mum Kylie hopes that Trikafta is the beginning, for the majority of people with CF, to a brighter future and better health. She hopes that other children get the benefits of this drug and that families don’t have to go through what their family have experienced.
Maddi & Kylie, it’s amazing to read your story and we’re so happy to hear that you’re doing so well! We’re crossing everything that it’s a positive outcome on Friday and those waiting will have Trikafta soon #YesToTrikafta
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