“Tristan Swanepoel was born with Cystic Fibrosis (CF). Completely genetic, incurable, and as the Doctors like to say: “born terminal”. If you have seen the movie “Five Feet Apart” you will have had a glimpse in to the life of a CF’er.
When he was first diagnosed the doctor was so shocked about the state of his lungs (they did a CT), he said it is a miracle that Tristan can function without oxygen, as he has holes, not properly functioning lungs.
We cannot afford Tristan’s medications, now more than ever, as I lost my job. We still go to Steve Biko to see Doctors and get his medications. The meds are the really astronomically expensive part of our day to day life.
Tristan was only diagnosed 5 years ago, and for the first 3 years, they could not trace the 2nd gene that combined with the Df508 gene to cause CF. But he had every single symptom. The Dr’s were fascinated as he presented with all symptoms, but they could not conclusively prove it without the second gene being found. After a series of bloods where they went looking specifically for genes, they finally found the second gene. HE was now not just presumed CF positive, it was fact. The missing puzzle piece was found.
We still stare the fact that his lungs are deteriorating day by day in the face. He builds no anti-bodies for any disease, no vaccinations have a chance to build his system up.The missing gene is so unknown that the doctors have to monitor him for any diseases that start to show. His type of CF mutates from the genes that cause it, and his 2nd gene is so rare, they have no frame of reference. They cannot prepare us for what might come.
CF sufferers with other gene mutations end up with: kidney failure, lupus, cancer, liver disease, heart disease, to name a few.
But we stay hopeful, stay on our knees. The doctors initially estimated he would need to have a double lung transplant by the age of 16. He is turning 14 on 26 March 2021, and he is still not on oxygen. He is still breathing on his own. He does complain about his legs hurting, a lot. And this is being looked in to.
He and his twin brother, Heyden, sat together to pick the new colours and charms for the new bracelets.They lean on each other every day. And what I treasure is even though they are “Teenagers” now, they still will hug me and tell me they love me. This is something in my life that I will treasure forever.”
This is a horrible disease and an immense battle to fight and so we continue raising funds to assist with Tristan`s ongoing medical expenses. Together we can make a positive difference and give him a fighting chance. Please support our fundraising initiative by ordering your bracelets today. Every little bit goes a long way!
Alternatively, please consider a donation. Any and all donations welcome. REF: Tristan Swanepoel.
Fundraising for Tristan Swanepoel
Lean on Me Bracelets
The “Lean on Me” Bracelets for Tristan consist of coloured wooden beads with crystal, silver and diamante fillers.
1. Silver with Puzzle charm
2. Black with Four-Leaf clover charm
3. Silver, black & red mix with crown charm
To place and order, contact the agent in your area or shop online.
65 Roses Bracelets
The “65 Roses Bracelets” for Tristan consist of dark purple wooden beads with crystal, silver and diamante fillers.
Rose bud / Angel Wings / Tree of Life Heart.
Some children struggle to pronounce Cystic Fibrosis and say “65 Roses”.