A birth defect does not stop this child from dreaming big


By AGENCY
Juan Jose was born with a congenital malformation: his left leg developed only as far as the femur and the kneecap. Photo: AFP

Juan Jose Guilarte is like any other 10-year-old as he races around a park in Cuba’s capital Havana.

But one detail distinguishes the sports-mad youngster who dreams of Olympic glory: his prosthetic leg.

Juan Jose was born with a congenital malformation which resulted in his left leg developing only as far as the femur and the kneecap.

His condition has never held back the effervescent youngster, who lists off a plethora of career ambitions, from “YouTuber, scientist and teacher” as well as elite athlete.

Twice a week he practises pentathlon – running, obstacle racing, swimming, shooting and fencing – and kung fu.

In his bedroom, a Spiderman figurine occupies pride of place on his desk. “I like him a lot because he is very fast and jumps a lot,” he confided.

“He loves to dream, create and tell stories,” his mother Sheila Guilarte said, noting that his condition never gets him down because he brims with self-confidence.

While no hurdle seems too high for Juan Jose to clear, his sporting ambitions have been thrown into flux by Cuba’s worst economic crisis in decades, aggravated by a United States oil blockade.

Since January, the Havana native has been waiting for an operation to prevent his thigh bone, which is still growing, piercing the skin of his stump, which would cause him unbearable pain.

Since the age of two he has already undergone three such procedures, after which he is fitted with a new prosthesis, adapted to his height and weight.

But a shortage of the anaesthetics used to sedate patients during surgery combined with recurring power outages have led to his latest operation being indefinitely postponed.

Juan Jose is carried by his pentathlon trainer Albert Luis Campbell (right) as his grandmother Suleimi Licea Rodriguez (left) and his mother Sheila G adjust his prosthesis. Photo: AFP
Juan Jose is carried by his pentathlon trainer Albert Luis Campbell (right) as his grandmother Suleimi Licea Rodriguez (left) and his mother Sheila G adjust his prosthesis. Photo: AFP

Awaiting surgery

According to the health ministry, 96,000 people, including 11,000 children, are on waiting lists for operations.

Before each sports session Juan Jose clips on a lightweight carbon-fibre prosthetic limb designed for running.

Getting his thigh into his prosthesis is more and more of a squeeze.

“It really hurts,” he confided, adding: “I want to be operated on now.”

His carbon fibre leg was a gift from a American boy with the same disability, who travelled to Cuba in 2023 to give away one of his artificial limbs after himself being on the receiving end of a donated prosthesis a few years earlier.

Juan Jose’s neighbours saw the offer advertised on social media and immediately notified his family.

A few days later, the two children met in Havana and Juan Jose came away with a new spring in his step.

His prosthetist personalised the new appendage with a little Cuban flag – which one day Juan Jose hopes to fly for his country.

“Since he was little he has said he’s going to the Paralympics to win a medal,” his mother said.

Juan Jose makes clear which podium place he’s aiming for.

“I want to win gold!” – AFP

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