Hero (8) saved lives from the start

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Jack Tilling
Jack Tilling

Despite facing a life-threatening illness, Jack Tilling (8) from Eversdal lived a remarkable life from the start, as well as impacting others barely hours after his death, family and friends say.

Jack, a Gr 1 learner at Eversdal Primary School, died two weeks ago after battling a short bout of flu, made worse by his rare underlying life-threatening condition, urea cycle disorder (UCD).

When living with UCD, any viral infection which causes fevers are deadly, his mother Alison says.

Alison, a housewife who lives with her husband Karl and other son Ross (12), says it’s important for her to talk about Jack. To honour him, shed light on his illness and also his last heroic act – donating his organs.

This act inspired teachers at his school so much, learners could dress up as superheroes to school days after his death.

“I sobbed,” Alison says about finding out about the initiative. “I felt humbled. Myself and my husband and son . . . we are just in awe and humbled by support and kind gestures. Especially from the school. I was so proud he made such an impact on people. And he really, really did.”

Those last days of his life will always be ingrained in her mind. Like the moment they wheeled Jack’s body 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 the donation.

She’ll remember discussing organ donation with her other son and him asking if they couldn’t find a brain to transplant into Jack’s body and bring him back to life.

But they all knew Jack wouldn’t want it any other way. He loved superheroes and was one throughout his life.

“I always joked with him that he was the gift that kept on taking, but he was the absolute gift who gave freely without expectation,” Alison said in a joint obituary written by herself and her husband, Karl. “He was a bright light. An unstoppable force for good. And even though he was not big in stature, he was the protector of those who could not stand up for themselves. Even getting into fights to protect his friends or someone who he believed could not protect themselves.”

Into the unknown

When Jack was born in 2014 there were health problems from the start. He struggled to suck and drink and was lethargic.

“I had this gut-wrenching feeling something is wrong with my baby,” Alison recalls.

The nurse told her everything was fine. But hours later she was woken by a nurse saying her child was gravely ill and to rush to the nursery.

There she saw a doctor pumping air into Jack’s lungs.

He was in a coma for the next two weeks and suffered numerous severe seizures daily. Doctors told the Tillings if he were to survive Jack would have severe brain damage.

Nobody knew what was causing the problems.

But as they drove home one evening, they got a call from the neonatologist, Dr Ricky Dippenaar, who told them he had recently read about a similiar case in a research journal where a boy in the UK was plagued by the same symptoms. This disorder was called urea cycle disorder. He started treating him for this disease.

Two days later the doctor called again and told the parents he had someone on the line who wanted to talk to them. It was Jack screaming in the background like a regular newborn. He was awake and had no brain damage.

This started a long process of finding out exactly what was wrong with him. UCD includes various subsets of the disease, each with its own required treatment.

The illness is so rare, Alison and Karl underwent genetic testing and the samples needed to be sent to Johns Hopkins hospital in the United States.

The results showed Jack’s specific disorder is called carbamoyl phosphate synthetase (CPS1) deficiency, an inherited disorder that causes ammonia to accumulate in the blood. Ammonia becomes toxic when the levels are too high and the brain is especially sensitive to the effects.

With the diagnoses, they knew exactly what Jack could do and how he could be treated. He couldn’t eat most forms of protein or dairy. But he still met all his milestones, amazing doctors along the way.

Alison believes all children should receive a newborn screening after birth, which would have picked up abnormalities much sooner.

She has kept up a blog about their UCD CPS1 journey for years. This has saved at least two children’s lives – one in India and one in Poland, as desperate caregivers found the information while searching online for answers.

The end

For the first five years of his life Jack was in hospital for a week almost every month. That’s possibly why his end came as such a shock.

A teacher called Alison on Thursday 28 July saying Jack wasn’t feeling well. He was crying and had a fever, something very unlike him.

They took him to the hospital the next day, but he became delirious on his way there. He was kicking and biting and the Tillings realised his ammonium levels were too high. Hospital staff needed to sedate him. “He didn’t look like Jack,” Alison says. That was the last time he was awake. She now realises his body was already shutting down that evening. He was finally transported to Red Cross Hospital, but tests showed he had no brain activity. The organs they could donate, his kidneys en corneas, were transplanted into three different people’s bodies.

A service was held for him at the New Apostolic church in Bellville.

“We don’t have any regrets,” Alison says. Others in their situation could say they wished they hugged their child more or kissed him more, but they did it all. And Jack lived his life to the full. “Filled with adventure, filled with unconditional love for everyone he met.”

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