Posted on

Fundraising for Tristan Swanepoel – Cystic Fibrosis

Tristan Swanepoel

Tristan`s story:

Tristan Swanepoel and his twin brother Heyden, were born 11 weeks premature on 26 March 2007. Tristan was born with a cleft lip, weighing only 1.32kg, and was on full respiratory aid up until the day before they were discharged from NeoNatal. His lip was surgically repaired at 6 months of age. 

Within a month of his lip surgery he had his first bout of double pneumonia. By the time he reached 15 months, he was in hospital with double pneumonia for the 8th time. At this point he was being discharged after generally spending a week in hospital with no real improvement in his health.

By the 8th time he was in hospital, his mom, Nadia, decided to take him to a different hospital. Since admission, daily x-rays showed deterioration of his lungs and spreading of infection at a nearly hourly rate. He kept getting sicker and sicker. Tests were done on him from HIV to TB to CF (only problem being, you need pure sweat to test for CF, and he was on intravenous medication, so none of the tests were conclusive). 

On the 8th day of hospitalisation, the doctors were becoming concerned that whatever infection he had in his lungs had spread to his brain. They did a Lumbar Puncture on him, but the fluid was clear. By the end of that day, Friday 15th August 2008, there was very little answer as to what was making Tristan so sick. 

At around 19:30 that evening a nurse came in to take his vitals and found Tristan`s temperature had reached 40.2 degrees Celcius.  She picked him up, stripped off his nappy and plunged his body in to the icy cold water in the tub.  His body then went completely rigid and he started convulsing for over 3 hours before he was finally stabilised and ready for transport. 

At this stage his heart had reached the point of arrest twice, he was vomiting up blood through the convulsions, and he had stopped breathing on his own. They arrived at the new hospital just after midnight, the paramedic in the ambulance having done manual oxygenation on him the whole time.  They worked to stabilise him until after 3am but he was now in a coma, being kept alive by machines. The coma lasted 32 days, during which time they opened the ICU 3 times so that family and friends could come say goodbye. 

The last time the doctors had all but given up hope, as they were unable to get sufficient oxygen in to his lungs he had started to turn blue. He spent nearly 18 hours with oxygen saturation below 60% and they had pulled blood out of his lungs when suctioning his airways. The family was told that there was no hope and that he would not be able to hold on, and that if he pulled through. he would have severe mental deficits, be either blind or deaf or both.  But he woke up, was extubated, and eventually went home 2 weeks later.

Since the coma, Tristan didn’t develop the way his brother did. He was extremely thin, had dark circles under his eyes, was always physically tired yet battled to sleep. His lungs caused panic for any person with a stethoscope and he had to use a nebuliser on a daily basis. Not only were his lungs a big concern, but his stomach as well. Nothing was right about the function of his organs. Just before the twins were about to turn 10, he was exposed to someone with TB and the boys were rushed off to their GP who ordered x-rays of Tristan`s lungs.  The report on the x-rays came back stating the best case scenario was TB, noting swollen lymph nodes in the lungs, suggesting that even lung cancer was possible. 

The GP then referred him to a paediatric specialist on 7 March 2016.  He did a full exam, head to toes on Tristan, and he was hospitalised immediately and put in an isolation room. The doctor proceeded with questioning and decided to test him for Cystic Fibrosis. The first 3 days in hospital they did the sweat tests, all yielding positive results. They did blood tests, as well as a milk test which showed that he has severe reflux, and that stomach acid is being pumped up in to his lungs. 

A CT was performed on his lungs which showed that they were full of holes. With the test results being what they were, the doctors ascertained that Tristan may live to the age of 16 before he would need a double lung transplant; he may live to the age of 21 if he is relatively healthy.  The medication he needs to keep his organs functioning cost more than his mom`s monthly salary.  They were on medical aid but due to a lot of circumstances, had to give that up.

Tristan was referred to the CF Clinic in Paeds Cardiology Dept of Steve Biko Academic Hospital in Pretoria in June 2016.  Within the first year of being there a bone density scan was done and it was discovered that his spinal bone density was very low.  He was Osteopenic.

According to the doctors at the clinic, he is one of the most “textbook” cases of CF that they have seen. He has all of the symptoms and all of his organs are affected by the disease. He also has a version of the disease that causes a mutation of the one gene. Before mutation – he has CF and a severe immune deficiency (he gets flu shots and pneumococcal vaccinations every year).  With mutation – he runs a very high risk of Lupus and Leukemia, to name a few diseases. He will develop diabetes pretty soon, as the disease affects the lungs, liver, pancreas, reproductive organs & colon, but does spread and affect other organs as well.

This is a horrible disease and an immense battle to fight for a single mother, and we would like to assist her 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 65 Roses bracelets today. Every little bit goes a long way!

Update 30 May 2020: “Tristan’s pneumonia is relatively under control. Have to go back to the CF clinic on Wednesday for test results (doctors fear Pseudomonas, if he tests positive the infection will be colonized and his lungs won’t ever be infection free again). Keep positive thoughts that he is negative, please. Having CF at a time like this is a nightmare, especially now that the doctors have diagnosed chronic lung disease on top op CF, Osteopenia and Asthma. His lungs are a major concern. But he keeps fighting, little warrior.”

Update 3 December 2020 from mommy, Nadia: “We had our clinic day yesterday. Tristan is losing weight, which concerns the doctors as it seems the medication is not helping him absorb nutrients. He has another chest infection as well, wheezing in his lungs, active couching. The doctor is also concerned as his temperature is lower than normal, and his skin is cool to the touch. So they are making an exception, he has to be back at the hospital next Thursday, gonna be put on a drip, loads of bloods need to be taken for tests, and he needs his bloodsugar tested (going to do a fasting glucose test on him) – since CF patients have a pancreas that doesn’t function without help, they become diabetics, it seems this is the new concern for the Drs as Tristan was such a late diagnosis (you are born with CF, due to defective genes from both parents combining to cause it – Tristan was only diagnosed at age 9), he didn’t have the benefit of lifelong treatment.” 

Fundraising for Tristan Swanepoel

Shop Online

65 Roses Bracelets for Tristan; consisting of dark purple wooden beads with crystals – and a Rose bud, Angel Wings, or Tree of Life Heart charm.

To place and order, contact the agent in your area or shop online.

Alternatively, please consider a donation; any and all donations welcome. REF: Tristan Swanepoel.

Some children struggle to pronounce Cystic Fibrosis and say “65 Roses”.

Share ღ