Trikafta Funding For 20Yr Old Izaeah with Cystic Fibrosis

I am writing this on behalf of my nephew Izaeah who was born with Cystic Fibrosis.

https://www.cfnz.org.nz/about/what-is-cf

Izaeah is a 20yr old boy, he is the brightest, most cheerful, loving and gorgeous boy I know, his health has been on the decline in recent years, which us as a family are struggling with, and as such are looking for ways to help prolong his already short life expectancy, and with this drug hopefully significantly improving his quality of life. Unfortunately there is no cure for Cystic Fibrosis but a new drug called Trikafta which is $311,503USD per year ​https://www.advisory.com/daily-briefing/2019/10/28/cf-drug​ has been tested, approved and shown that it improves the health of sufferers of Cystic Fibrosis.

Because this drug isn't available through Government funding in New Zealand and is extremely costly we are trying to do everything we can to raise funds for Trikafta such as fundraisers, gofundme, contacting Jacinda Ardern and Pharma ect.

We have a doctor from Christchurch who is willing to prescribe and monitor Izaeah with Trikafta if we raised enough funds so everything would be as smooth as possible.

Whilst we don't know if Izaeah’s health will improve with Trikafta, we want to do everything we possibly can so we don’t have any regrets when his time comes. Izaeah says “It’s okay, I’ve hopefully got more than a few years left, and I know that, that money can be put to better use.” But I disagree. Already having lost his brother to Cystic Fibrosis, and the impact it had on my sister (his mother) and our family, the thought of going through it again is unimaginable.

The drug can only be brought into New Zealand a few months supply at a time. Even if we don't reach the goal, the drug is $39,000 per month, minimum funding would be at least 1 month but we would like to try for a whole years. If we don't meet the minimum goal of $39,000 through Givealittle we will be fundraising in other ways too, saving every $ till we can at least try the drug.

So please if you can donate, every cent will be appreciated. If you have any questions or suggestions please email me on

faithvd@hotmail.co.nz

THESE ARE IZAEAH'S STATS FROM 13/01/2020

Severe impairment lung function Respiratory failure

Cystic Fibrosis diabetes

Currently hospitalised every 8 to 10 weeks for 2 weeks

BMI 18.9

Weight: 46.7kgs

On Full time oxygen

Overnight feeds through peg in stomache

Lung function

21% FEV Predicted

27% FVC predicted

FEV is how much air a person can exhale during a forced breath

FVC is the total amount of air exhaled during FEV

Interpretation of % predicted

>75% Normal

60 - 75% Mild

Obstruction

50 - 59% Moderate

Obstruction

<49% Severe

Obstruction