Short of breath, full of Life - Everesting Cystic Fibrosis World Record
Short of breath, full of life is the poetic depiction of Jason Van Slots Cystic Fibrosis journey.
The poem draws a parallel between with Cystic Fibrosis and his recent World Record attempt. As he searches for Identity through the life threatening disease he is faced with difficult choices that define his path and set him apart. He smashed the Cystic Fibrosis World Record by 1 hour and 8 minutes. Jason continues in hope to raise awareness of Cystic Fibrosis and to raise funds for negations to bring life saving medication into South Africa at affordable prices.
Cystic Fibrosis (CF) came with a life limit expectancy until Trikafta/Kaftrio was developed, a lifesaving medication for this chronic lung condition. The cystic fibrosis community, Jason van’t Slot included, didn't know if a medication like this would be available in our lifetimes. Now it is available, but unfortunately because of South Africa’s geography and its financial cost it’s impossible for most in South Africa.
The aim of Jason van’t Slots ‘Everesting’ (the act of cycling laps of a single hill, until the height of Mount Everest (8848m or 29 000 ft) is accomplished in one ride and no sleep) is raising funds and awareness for the South African Cystic Fibrosis Association (SACFA) to support legal negotiations and other costs necessary to facilitate access to this life changing medication (Trikafta/Kaftrio) for all South Africans living with cystic fibrosis at an affordable price keeping in mind the county's poor economic status. This medication is available in selected first world countries, but at the moment those living with cystic fibrosis in South Africa have to go overseas to get their hands on it. It’s also financially impossible for most as the price for a 12 months supply of Trikafta is around R6 million or $311 000.
Poem
This massive mountain I must climb.
Steep. Rocky. Dangerous.
Im still.
I can't stay or i’ll fade.
I breathe one more step.
Drowning lungs never fully filled…Yet i fight.
Carving a path along the way for others' still…stuck.
My lungs are syrup and the mountain is scolding,
I push onwards and upwards, my stories of choice, a grace unfolding.
My lungs rise, I look up and see the prize through widening eyes.
Medicine to pause to breathe, absorbing air that gives life.
I am at a point where every breath counts.
My time is running out. I need your help.
I can not breathe.
I will finish the climb, this is my purpose this is my time.
I breathe in hope you will join this massive mountain we face,
our choices have power in extending the Grace.
Help free us to breathe and finish the race.
If you want to know about this journey and how you can help pls go to www.givengain.com/cc/everesting-for-cystic-fibrosis/
Credits: A Quite Franckly Film. Production Producer Grant Franck & Marius Van Rensberg - Directed by Grant Franck — Poem Written and read by Grant Franck - Cinematography by Marius Van Rensberg - Sound Design by Greg Canning - Edit by Grant Franck & Marius Van Rensberg - Color by Grant Franck & Daniel De Villiers - Drone Justin Sandmann
