Cape Town – Jack Tilling, a Grade 1 pupil at Eversdal Primary School in Durbanville, Cape Town, reportedly died recently at the age of eight, and his family and friends have described him as a “hero”.
According to reports, Jack lived a remarkable life right from the start, as he suffered from a rare disease, urea cycle disorders (UCD), which causes a build-up of toxic ammonia in the blood.
His heart-broken parents agreed right at the time he was declared brain dead, that he could be an organ donor.
“My son Jack Christian Tilling was born on the 15th June 2014. He was healthy at birth, but 3 days later everything changed. After being breastfed he projectile vomited, and thereafter showed signs of lethargy. His breathing was also labored. I told the nurse that something was wrong and that he was not able to feed and was extremely tired. She said I shouldn’t worry about it and it could be that he had been fed too much and was tired. But I couldn’t shake the feeling that something was wrong. In the early hours of the morning I was awoken by the nurse who told me my baby was gravely ill and that I had to make my way to the nursery. On my arrival I found a sight no parent should ever have to witness.
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“The doctor was pumping air into my newborn’s lungs as he was not able to breathe on his own. He said he had been assisting Jack to breath for the past half an hour and would not stop. I asked him what had happened. He looked at me and responded in a calm and gentle manner that Jack was in a coma and that he was struggling to breath. He assured me again that he would not stop breathing for him,” Jack’s mother Alison said four years ago in a testimonial shared in a blog by Next Biosciences.
So that was the beginning of what finally came to be diagnosed two and a half years later as Urea Cycle Disorder called CPS1, which led to his death recently.
According to YOU magazine, Jack’s classmates paid tribute to their classmate’s heroism with a Superhero Day at school, which saw them all dressing up as their favourite characters to celebrate Jack’s life.
“I cried when I heard about the Superhero Day.
“Jack’s favourite superhero was Spider-Man. He called himself Stomach-Man, because he had a big tummy, and he’d run around the house with a cape,” the report quoted Alison as saying.
Jack Christian Tilling’s remarkable UCD story.#UCD #UreaCycleDisorder #UreaCycle https://t.co/74DOEjQbEM
— Urea Cycle Disorder (@ureacyclerm) August 16, 2020
Jack was declared brain dead on August 1 after he was admitted to hospital with flu.
Netwerk24 reported that the last days of his life would always be ingrained in Alison’s mind, particularly the moment when he was wheeled to the operating room where his organs would be removed.
“Countless doctors, nurses and other personnel gave a hero’s salute and held a guard of honour for his life and the lives he saved with his donation,” the report said.
Alison remembered she and her husband Karl discussing with Jack’s older brother, Ross (12) about their decision to let Jack be an organ donor.
Ross had wanted to know if they could transplant a brain into his little brother, “and I told him that, unfortunately, it doesn’t work that way. But when I told him Jack’s organs would help others live a normal life, he said, yes, we should donate Jack’s organs because that’s what his brother would’ve wanted – to help other people,” Alison said as per reports.
“It was very emotional,” Alison said.
Jack’s kidneys and corneas were donated to three different people, reports said.
A service was held for him at the New Apostolic Church in Bellville.
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Picture: Twitter/@ureacyclerm
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Compiled by Betha Madhomu
