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Dad pays tribute to little battler Leo, who has fought rare genetic illness

By Victoria O'Hara

The father of a little boy born with a rare genetic condition that affects only one in 100,000 people has spoken of how despite being told three times he will die, his son "is a wee fighter".

Leo Knight has spent almost four months in hospital in Manchester receiving what is hoped is life-prolonging treatment.

His parents Mark McKnight and Eva Johnson, from Poleglass in Belfast, were told last year that their only child who was born in January 2014 had Hurler's syndrome.

This means Leo lacks an enzyme that, without treatment, means waste in the body builds up within the tissues, causing swelling and fatal damage to his organs.

Without treatment his life expectancy would be just 10 years. Since his diagnosis Leo has, under the care of specialists, undergone chemotherapy, a bone marrow transplant and countless platelet transfusions to try and slow down the disease. It was when he was two weeks old his parents started to notice a number of problems with Leo's health.

"He was born on January 18 and two weeks after he was born we noticed he had a hernia and had his first operation. Leo was also born partially deaf in both ears," his dad said.

It was then spotted he had problems with his spine, but more dramatically his head started swelling. Mark (29) and Eva (27), a former nursery assistant, took him to Royal Victoria Hospital last December.

"Initially we were told the swelling was possibly an ear infection but we knew it was something more. We fought and fought and he was brought over to the City Hospital, where he had a blood test and they confirmed the results in January; it was Hurler's syndrome."

Mark added: "It was explained to us that his body is missing an enzyme that helps to break down unwanted material in the body. It affects his liver, his kidneys, his bones then become stiffer and spine becomes worse and his health would deteriorate. To hear your son has something so rare does come as a complete shock."

Leo immediately started enzyme replacement therapy for four weeks and then was moved to Royal Manchester Children's Hospital. This meant the couple faced months in hospital away from friends and family. They have been supported by The Ronald McDonald charity, which has provided free accomodation.

"They have been fantastic, I don't know what any family going through something like this would do without them," he said.

The family had a glimmer of hope at the end of March when after the bone marrow transplant he was discharged, but suddenly he became gravely ill.

"We were giving him a bath one night and noticed that he had purple spots all over him. We took him to the A&E and he had no platelets at all. He was coughing up blood. His blood was clotting and hemorrhaged into his lungs. They said if we can't stop this bleeding you may have to prepare yourselves you could lose your son tonight - that was on April 3."

Mark said he remained critical for a month.

"Three times we were told he was going to die, three times he came back. He is Rocky," he said.

"You have to stay strong but at the same time it gets to you, but Eva lifts me up and vice versa. And the support we have had from family and friends at home has been amazing."

The couple said they remained positive for their son, who they describe as "a smiler". "Our hope is to bring him home and he has a long life," he said.

Belfast Telegraph


From Belfast Telegraph