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Keep Bella Breathing - Trikafta, the Cystic Fibrosis (CF) Non -Funded 'Miracle Drug' cost $470k per year!!

Cause page created in the Kiwi Kids category by Sarah Macdonald for "Isabella Powell(Bella)"


$200,334 donated
Given by 2119 generous donors in 7 weeks
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Bella's main hope is Trikafta, as she faces the reality of losing her life!

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  Auckland

Seventeen-year-old Bella Powell lives with cystic fibrosis (CF). At 15 she was told she only had two years to live if her condition went untreated.

Cystic fibrosis affects the cells that produce mucus. They then plug up the tubes and passageways which puts massive amounts of pressure on the lungs, eventually wearing them out.

Since cystic fibrosis is destroying Bella's lungs, she needs a lung transplant. She was put on the lung transplant list, however a new set of lungs have yet to come and the risk is high, the lungs might not work - she could die on the waiting list or on the operating table.

Living with her condition is like "having a pound of weights on your chest", she says.

"Your ribs can't move, you can't get enough air in. Your body is always sore.

Bella, with nothing to lose, as she faces the reality of losing her life, started taking Trikafta. A drug that's in limited use in New Zealand, and says her breathing had cleared in six hours after taking her first pill.

She takes three pills a day, two in the morning and one at night. Two weeks ago before she started taking them, she could barely walk. But now she says she feels great.

"[It's] more than a miracle. If there's a word that's bigger than a miracle, it's that."

But Trikafta costs $469,000 a year. It's owned by American company Vertex, which sets the price and it isn't subsidised by Government drug-buyer Pharmac.

She also only has a three-month supply.

Generous donors have funded three months of Trikafta for Bella. As any family would, we are looking down all pathways to find more funding to keep Bella breathing!

This is where you come in!

Until this drug is funded in New Zealand we face having to pay $470k per year, this is an unimaginable amount of money for anyone and is Bella's lifeline!

Please donate to Keep Bella Breathing

More links:

https://www.facebook.com/TheProjectNZ/videos/752021508673131/

https://www.newshub.co.nz/home/new-zealand/2020/08/trikafta-campaign-group-calling-on-government-to-fund-miracle-drug-for-cystic-fibrosis-sufferers.html?fbclid=IwAR0cP9t5Mz10448N7_wg_n5QUHFSqTLlmB1aVTFU-nH22t2mtYz9qowEokA

https://www.newshub.co.nz/home/new-zealand/2020/08/kiwi-teen-with-cystic-fibrosis-sees-miracle-results-with-new-drug-trikafta-but-it-costs-470k-a-year.html

https://www.facebook.com/TheAMShowNZ/videos/2670601139860612/?epa=SEARCH_BOX

Keep up to date with campaign progress and ways to help by joining the Access for Aotearoa - Campaign for precision medicines for Kiwis with CF advocacy group and by liking the Trikafta For Kiwis community page.

Sarah Macdonald's involvement (page creator)

I'm Bella's Aunty. Our family is blown away at the kind and generous donations, we are forever grateful. We work towards getting Trikafta funded for all CF sufferers in Aotearoa/New Zealand and securing enough Trikafta for Bella in the future.

Use of funds

Funds will be used for Bella's ongoing Trikafta treatment.

Other page links


Latest update

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Bella on RNZ - Sunday Programme with Jim Mora  30 August 2020

Posted by: Sarah Macdonald

Check out this link to hear Bella and Alley talking about how they are feeling since Bob's death. Also, where to now for Bella and the campaign for getting Trikafta Funded for the 500 + CF sufferers in Aotearoa/NZ.

https://www.rnz.co.nz/audio/player?audio_id=2018761764

Read 5 more updates  |  Share this update


Latest donations

Karlabelle
Karlabelle 5 days ago
On behalf of AJ's 50th. My mother heart is with you Alley and Bella
$160
Royal Rawa Surf Lifesaving Club (Toronto Branch)
Royal Rawa Surf Lifesaving Club (Toronto Branch) 5 days ago
Love to you all from Toronto. Kia kaha.
Private
Fellow CF patient from USA
Fellow CF patient from USA 6 days ago
We live in the States - my daughter (16) just started Trikafta 6 days ago. It is a miracle drug! I hope this helps to get you the miracle you need. If your daughter wants to pen pal ever, reach out.
$300
Jamie
Jamie on 16 Sep 2020
$25
Rachael
Rachael on 16 Sep 2020
With love from Bella & Alex
$50

Who's involved?

Sarah Macdonald's avatar
Created by Sarah Macdonald
Alexandra Powell's avatar
Paying to a verified bank account of Alexandra Powell on behalf of Isabella Powell(Bella)

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This page was created on 3 Aug 2020 and closes on 3 Nov 2020.
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