‘THERE IS NO OTHER KID LIKE ME IN AUSTRALIA’
Enzo Cornejo is the only known Australian with progeria, the disease of premature and rapid ageing. Just don’t expect it to slow him down too much or dampen his outlook on life
I LIKE BEING DIFFERENT BECAUSE I LOVE MY BODY. ALSO, I’M A HANDSOME BOY. I’M HAPPY JUST BEING ME
Meet Enzo Cornejo, Adelaide’s one in 20 million boy who is squeezing more joy, friendship and Vegemite into a day than most of us. Diagnosed with the rare condition progeria – the disease of premature and rapid ageing – this bright and energetic 11-year-old is shrugging off medical complaints usually associated with the elderly, such as high blood pressure, and cholesterol and the risk of arteriosclerosis. The only known Australian with progeria, Enzo hits the ground running each day, just another boy at school who loves playing with his friends.
“I like being different because I love my body,” Enzo says. “Also, I’m a handsome boy. I’m happy just being me.”
Enzo, who is in year 5 at St Mary’s Memorial School, Glenelg, has reached an age where his parents, Catherina Llontop and Percy Cornejo, want him to be a more familiar face in the Adelaide community, so he can move around without a fuss. He is well known at his school where new students are told there is a special boy ahead of them. But he has not been introduced more widely before because he was too young to talk about it.
He grew up knowing he was special but only understood progeria about a year ago after Llontop and one of his therapists compiled a My Story booklet that charted his birth, diagnosis and symptoms.
“It kind of makes my body very old, very quickly,” he explains. “It makes my veins very visible and also my heart is very delicate, and I don’t have much hair.”
He doesn’t mind when people come up and ask questions about why he looks the way he does and says talking about it does not make him sad.
“It’s OK for them to come up and ask questions in a respectful way,” he says. “Like, ‘Enzo, hello, how come you don’t have much hair?’ Or ‘Why are you smaller than me?’ So long as they say it in, like, a positive way.”
He is proud of being special and knows there is no one else in Australia like him. “There was another one in Victoria but he sadly died,” he says. Their families are close and support each other, and Enzo wishes he could have met the boy, Chris, who died just before his 21st birthday in 2003, before Enzo was born.
Much of his day is spent on his iPad where he
makes videos for his YouTube channel, Enzocubehead, while fitting in fulltime school and a range of specialist and therapy appointments, and seven daily medications.
He manages all this with the support of a network of doctors, therapists, teachers and his parents who did not know until Enzo was three that there was something wrong, and that Enzo would face challenges only a few hundred others around the world could understand.
Llontop and Cornejo are Peruvian immigrants who came here in 2007 seeking a better future for their family.
Enzo was their first, very wanted child and he was born eight weeks premature on August 31, 2011. His skin texture was different, not quite baby soft, but his premature birth could have accounted for that.
“We weren’t worried. He was happy and he was in the 95-percentile range at that time,” says Llontop who works as a financial accountant in the city but prefers to be known as Enzo’s proud Mum.
His growth later dropped below average but he was a chubby-cheeked toddler with big brown eyes and there was nothing obviously wrong. There were certain baby things he couldn’t do and some motor delays but he was free of pain, and happy.
Only when his growth dropped well out of the range for his age did his paediatrician start looking for an underlying cause. Just before he turned three, his genetics doctor ran detailed tests that eliminated one possible condition, which left the test for progeria.
Llontop had come across progeria once before but knew very little about it. “The name stuck in my mind,” she says.
When the results came in, the doctor called and asked if her husband was coming too.
She didn’t realise then but it was a sign of what they were about to hear, a diagnosis so rare that none of his doctors in Adelaide had ever encountered it.
Enzo came to the appointment too and Llontop thinks it made them stronger to hear the diagnosis with him in the room.
“We went and he told us and said he knew of a progeria group in America who were doing trials,” Llontop says.
They were given information about the Progeria Research Foundation (PRF) in the US which is the only organisation running clinical trials or searching for a progeria cure. The foundation’s work, more than anything, has
given them hope. Llontop and Cornejo, a chef, took time off work to research the condition, learning as they went along. They contacted the PRF in America that week, began paperwork for the NDIS, talked to his childcare about extra help Enzo might need and booked in to see his new doctors.
“We knew we had to be very careful with him,” says Llontop, who found support from other families overseas through the PRF and a private Facebook group. One of the first American mothers to contact her was the mother of Zach who Enzo met later at a progeria camp.
The following April the family flew to the US and Enzo has now been through three clinical trials. As a result of one of them, the medication Lonafarnib was approved as a treatment for progeria and is now prescribed and delivered to him through the Women’s and Children’s Hospital.
At 11, he is tiny and frail and care must be taken to create safe spaces so he is not accidentally knocked over, although Llontop says that now he is older he knows how to look after himself and safely hang out with his friends.
He has grown especially close to his paediatric physiotherapist Tanja Samira Jorgic Rudd, who is involved with his care and has worked with the family since he was young. Rudd, who is in Switzerland with her family and grew up in Brazil, chats with Enzo and the family regularly, and says the focus is on maintaining his mobility and strength rather than trying to regain it.
“It is a gradual, degenerative condition so we treat individual goals rather than the condition itself,” she says.
One of the reasons he is living his absolute best life is a small school at Glenelg which could not have been more welcoming and inclusive.
The principal of St Mary’s Memorial School, Nat Izzo, had no hesitation when Enzo’s parents approached them about enrolling their son at school.
“Our view is that all children have needs, whether academic or physical or emotional, and our job is to help any child and every child to find a place within our school community,” Izzo says. “So no, we had no reservations at all.” To prepare the other children for meeting Enzo, Llontop made a booklet explaining the condition and letting them know he was tiny, and would remain so, and that there would be other changes to his body as he got older. “Initially, he was probably the same size as the reception students so there wasn’t a lot that needed to be done,” Izzo says. “Since then, we have made some mild modifications to toilet seats and so on.”
The children took Enzo under their wing and embraced him from the start. He is friends with everyone, full of beans and talks almost nonstop.
“Some of my staff acknowledge him as the Energiser bunny, he won’t be quiet!” Izzo laughs. “Any topic that you raise, he will start talking about, he is full of life basically.” The whole of the school knows they need to be gentle around him, that he can’t fall over, that his skin is thinner, his bones are fragile and he gets out of breath.
On the school’s Friday walk to the beach, a wheelchair is on hand so Enzo can jump out on the way if they stop, and play when he gets there. Without that, he would be too tired to join in. Rudd, who does hydrotherapy with Enzo, also visits him at the school and spends time with him playing one-on-one basketball or soccer, sports that would be too dangerous for him in a rough and tumble setting.
“For lunch and recess, he often stays in the library or uses a small corner of the yard,” Rudd says.
The school also supports him in other ways, with teachers shaving their heads or cutting their hair to raise funds for Team Enzo and the registered Enzo Cornejo Necessitous Circumstances Fund that covers the family’s trips to the US.
“Each year we have an Enzo day – ‘hats on for progeria’ - and we all buy a hat and support his cause,” Izzo says. “A couple of teachers who were with him at the beginning have become virtually a part of his family.” He is football mad and a massive Crows supporter, wearing his jersey and beanie wherever he can. He doesn’t have a favourite player, he says, because he loves them all. Concerns about the potential for bullying were always present but his experience has been unrelentingly positive. Izzo says new students are fully accepting once they are told there is a child with special needs, whose skin is thin and who doesn’t have much fat on him, but who is otherwise like them.
Has he ever been bullied at all?
“No! Not for 11 years,” Enzo says. “Because my friends are nice to me, I have made so many friends, everybody is my friend.”
Sometimes, a story will come on the news about bullying and Llontop says Enzo is sad for them and says, “that kid, they should go to my school.”
“I feel sorry for kids who get bullied,” Enzo says. “Also, I think I feel sad for the bullies as well because I think they were bullied by others. And then they don’t have a happy life.”
A lot goes on behind the scenes to make sure he doesn’t miss out on having fun. He has just transitioned from a manual scooter to an electric one so he can keep up with his friends without tiring. He is also practising using his new wheelchair which was the manual one he has had for five years converted with a small machine to a much cooler electric-powered version operated with a wristband app. He doesn’t have it at school yet but may try it out later this year.
“Now he loves his wheelchair, now he’s basically got a little car, he’s faster than his friends and everyone is jealous of him,” Rudd says.
His medical team read up on the condition but none of them had handled a progeria diagnosis. “We don’t know about progeria, so maybe you know more than us!” the doctors basically told the family. His primary care is through a metabolic clinic team, who control the medicine for progeria, and he also regularly sees other specialists including a cardiologist, a neurologist and renal clinician. His blood pressure went up last year so he had a short time in hospital while it was brought under control and is back to normal.
He has two friendship groups, one at his
school and the other in the US where he went in 2015 and 2017 to the Hole in the Wall Gang camp for progeria kids. His TeamEnzo website shows him in his “tiny but awesome” T-shirt with two progeria friends, one of them Zach.
“It was happy, all of them are my friends,” Enzo says. “They all looked like me, like we are part of a big family. We went fishing and I loved that, it was hilarious.”
Enzo is a very fussy eater. At Montezuma’s restaurant at Glenelg, where Cornejo is the cook, he has in front of him a snack box whose key ingredient is his favourite food, Vegemite. He is eating it straight off a tiny spoon from a catering pack his mother gives him to ration how much he consumes. Left to himself he would eat Vegemite from the pot and would get through a pot in a day. He should be sponsored by Vegemite, Llontop laughs.
It’s all about the salt, she says, which also explains his love for KFC chips, his second favourite food. Other than that, he struggles to eat and doesn’t have a sweet tooth or look forward to mealtimes.
A while ago Llontop was told about an audition for Embrace Kids, the body-positive documentary being made by Adelaide’s Body Image Movement founder, Taryn Brumfitt. They were looking for children in Enzo’s age range who were interested in body image and diversity and who had a story to tell. He applied, was accepted, and made more friends.
Llontop had never left him alone in a strange place before but by the second day, he was so at home and well cared for by the Embrace Kids team she was happy to go.
Enzo says he auditioned because he thought he would like it and have some fun.
“It was good to meet other kids and talk about their bodies and other things,” he says.
His secret dream, like many kids his age, is to be a YouTuber with lots of followers. While we are chatting, he picks up his iPad and checks because he thinks he might have picked up a subscriber. His self-made videos, which he is happy to talk about at length, feature a common theme around a Vegemite superhero conferring superpowers and wielding Vegemite breath to save the day.
“He wants to become the next influencer,” Izzo says. “He loves technology and has his own YouTube channel and he sees himself as an influencer. He has a group of children who follow him closely and support him.”