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Trikafta Funding For 20Yr Old Izaeah with Cystic Fibrosis

  • WE DID IT ❤️❤️❤️❤️

      19 August 2021

    Hey everyone! After a long drawn out battle, we've finally reached a point where for the foreseeable future we will have a supply of this medication completely free of charge. Izaeah has been accepted into a compassionate access program and is completely free to live his life now. Thank you to everyone who supported us and came along with us on this journey. We need this drug funded for everyone but things are on the right track. Thank you very much for your support over this near 2 years!

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    • 19/08/2021 by Tessa Linwood

      Woohoo! So happy for you guys!! ❤️❤️

    • 20/08/2021 by Elizabeth

      Wonderful news. Love to hear how you are doing

  • An update into 2021

      5 February 2021
    Main image

    Izaeah has been Donated 4 Months supply of Trikafta but he has 40 days left. he has featured on Newshub with a heartbreaking interview in an attempt to bring more awareness of the topic, but once his supply runs out, he's looking at 6 months to a year. My sister has already lost one son to Cystic Fibrosis.

    We have donated $20,000 of the money raised to Cf Vests 4 Life foundation as thanks for the 4 Months supply they provided him with (half the cost of 1 months supply).

    PLEASE SIGN THE PETITION SO WE CAN PRESENT IT TO PARLIAMENT SHOWING THAT CHANGE NEEDS TO BE MADE!

    https://www.parliament.nz/en/pb/petitions/document/PET_99952/petition-of-carmen-shanks-publicly-fund-trikafta-medication?fbclid=IwAR3Dartu9UbC2azOYTVjXd2qXVf8YHxAcwYBvw3NuJOZgCyjtmUp7OeebCk

    NEWSHUB INTERVIEW

    https://www.newshub.co.nz/home/new-zealand/2021/02/kiwi-with-cystic-fibrosis-says-he-ll-probably-die-once-his-supply-of-life-saving-drug-runs-out.html

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  • Exciting news 😀

      1 February 2021

    We've raised nearly half of the requirement to get 1 month of pills and we are very grateful for everyones messages and kind words and donations.Despite not reaching the 1 month goal, we've secured 4 months supply with the money we've been given and are looking forward to your continued support and lovely messages! We still need to reach our goal! Tune in to NZ-TV3 on Tuesday Wednesday ans Thursday to see a 3 part special on Trikafta in New Zealand

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  • How Izaeah is doing while we raise the funds

      4 August 2020

    How Izaeah is doing while we raise the funds

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  • Update on Izaeah

      11 June 2020

    I would just like to write an update on where we at and how things are going for Izaeah.

    First and foremost Id like to thank everyone for your donations and shares. Every $1 helps and every share reaches someone who may be able to help.

    Izaeah is currently in hospital on iv antibiotics as he has been coughing up blood, so not good, they have also discovered he has been anaemic for the last 9 months so hopefully a few doses of iron give him more energy than he has had lately.

    Izaeah will be 20 at the end of this month and we hope to reach our goal so at the same time next year we can be planning his 21st. Another lady who had been fundraising for this drug has passed away before she could reach her goal. Cystic Fibrosis New Zealand, Vertex and Pharmac are currenntly in discussion about any plans pharmac may have for funding Trikafta. Information in link

    https://m.facebook.com/story.php?story_fbid=4301830803191043&id=171499682890863

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  • Letter from Izaeahs’s mum to Jacinda

      7 February 2020

    My son Izaeah is 19 years old and suffers from Cystic Fibrosis. He is the youngest of my four children. I have already lost a child to Cystic Fibrosis and the thought of losing another one is unbearable. Izaeah has been on oxygen 24 hours a day since he was 10 years old. Izaeah never complains, even though it’s a struggle for him to do most things. He has had this since he was born but only until recently when his new normal showed him how sick he really is. He’s been talking with me about his funeral and what he wants to happen but he has also said he’s scared and doesn’t want to die.

    A new drug that is available in America called Trikafta has been developed and treats the mutation that Izaeah has. Studies have shown that this drug reverses the effects of Cystic Fibrosis. We have started a give-a-little page to try and raise the money for the drug ourselves, but because the drug is $311,503USD a year this seems unreachable.

    So I am asking you as the prime minister to please consider funding this under compassionate grounds as the heartache from writing this is too much to carry. I know I speak for my other two children and grandchildren when I say please give my son, our brother and our uncle a chance at living and save our family any more heartache that the loss of Izaeah will bring

    Thankyou for your time and consideration.

    Lavinia Twose

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