In July 2020, Shaun and Bianca Pretorius from Benoni, Johannesburg, learned the devastating news that their son, Shaunie (11), a bright and happy young boy, was diagnosed with a rare, aggressive, and terminal type of brain cancer called Brainstem Glioma.
A devastating diagnosis
At the beginning of lockdown, Shaunie was struggling with fatigue and constant vomiting. Thinking that his condition was perhaps brought on by school stress and adapting to online learning, his parents took him to a number of doctors to see what was wrong.
Matters soon got worse when the antibiotics he was given did little to remedy his condition. Shaunie began struggling with his eyesight, had difficulty moving around and battled to communicate.
To determine the cause of Shaunie’s rapid decline, he was taken for CT scan at Linmed Hospital in Johannesburg.
The heartbreaking results of the x-ray determined that Shaunie has a cancerous tumour in his brain stem, a fatal condition known as Brainstem Glioma, which has a median survival rate of only 9 months.
With doctors unable to operate on Shaunie, he underwent 12 aggressive Radiation Therapy sessions to shrink his tumour and alleviate some of his pain.
To shelter Shaunie from the severity of his condition, his parents didn’t tell him that his tumour was cancerous, but he understood why he was beginning to lose his hair and that he was unwell.
“Hearing that your child, who has always been perfectly healthy, is fighting a deadly disease and only has a few months left to live is devastating. We don’t know how to tell Shaunie that he is dying. We still have hope that God will hear our prayers and that he will make it through” – his mom, Bianca said.
As there is no cure for Shaunie’s condition, he was being treated symptomatically with cannabis oil and steroids to help the swelling on his brain and increase his appetite.
Shaunie’s Birthday Wish
As only 1% of children diagnosed with Brainstem Glioma live up to 5 years, the Pretorius family focused on keeping Shaunie as healthy, as pain free and as comfortable as possible so he could enjoy the time he had left with his parents and his little brother, Mattie (3).
Focusing on all the things that spark joy for a young boy, Shaunie’s uncle Juandre Botha launched a crowdfunding campaign on BackaBuddy, to fulfil Shaunie’s ultimate dream of owning a Playstation 5, just in time for his 12th birthday on the 9th of March.
With generous support, Shaunie’s campaign raised over R24 000 and he was able to get the playstation he always longed for and was able to cover more of his medical expenses.
Update: Rest in Peace, Brave Shaunie.
“It is with devastating sadness that we would like to let you know that Shauni passed away in his father’s arms this morning after a year fighting Brainstem Glioma.The family’s hearts are broken and we please ask for your prayers and love for them on this most devastating day. Shauni is a hero, having fought through all this time and will be remembered as being forever young – a bright, kind and loving child who brought joy to everyone around him.Thank you to everyone for all the love and support through the year that Shauni and his family have been fighting this monster disease.Thank you to all the contributors, well wishes, prayers, blessings and kind words from you all. It is greatly appreciated.You are welcome to send us messages on this group so that we may forward on to Shauni’s family.” – A message posted on Shaunie’s Facebook group.