Marnus’ story: Living with Cystic Fibrosis

About the project

Being diagnosed with Cystic Fibrosis at the age of 10 months, our family was faced with a future with a lot of uncertainty, tears, and prayers.

Cystic Fibrosis is a life changing genetic disease affecting my respiratory and digestive system.  This sounds so simple, ordinary, and easy to get by with.  Until this disease forms part of your own life.

Being extremely sick from birth was challenging.  2009 at the age of 14 years drastic actions had to be taken.  A feeding tube and Port were the only hope to see 2010 Christmas.

I have never in my life experienced this kind of disappointment for my own body after waking up after the operation and looking down picturing my life, having this horrible tube being part of my body.  I have always been so proud of my body, now feeling sick just looking at myself.

Never planning for more than the day of tomorrow, It took years, including a few therapy sessions to start accepting my life, my body, my limitations, my struggles, my future.

During 2019, I took the first step in taking control of my own life, my body.  

My feeding tube and Port were removed.  NO implants ever again.  I felt free.  Started working out in the gym, enjoyed the beach and lots more.

There are no guarantees in life.  

After major bowel obstruction surgery, Lung Function dropping from 36% to 27% we are facing again that point that discussions need to be made.

There is no fuel left for me to function.  I am tired.  Breathing is difficult.  Getting up to go to work, being motivated is such a challenge.

It is so amazing that through all of this, my family, friends, and colleagues carried me when I could not walk.  Their love and motivation have been part of my life for 27 years.  These people were sent on my path by a Higher Hand.  The Lord has been so good to us.

Now, my future can only be with Trikafta/Trixacar.  Financially unaffordable.

I have been on Trixacar for 2 weeks.  My lung function has increased with 9%,  I gained 3kg,  It feels amazing.

Ordinary stuff, yes.  For me, life has just begun.

Please, I will love to have this for longer.  

With your donation I can plan beyond tomorrow.

Let me Breathe.