“Our biggest regret is that he can never look in the mirror and see how good-looking he is. He will never be able to see his brother and sister, and the world around him.”

This is what Karen and Johann Ellul told The Malta Independent on Sunday about their two-year-old son Quiven who, a year-and-a-half ago was diagnosed with cancer in both eyes and, as a result, lost his sight. His parents said that, since both eyes had to be removed, he will never see himself growing into a handsome man.

Quiven, who is the youngest member of the family, was born in January 2014 and his mother said his older brother and sister were ecstatic about the fact that they were going to have another baby in the house. When Quiven was three months old, his parents noticed that he had developed a squint and took him to the doctor. The medical advice they were given was that babies tend to suffer from a squint. “However, deep down I always felt that there was something wrong with my son,” Karen said. She and her husband kept taking him from one doctor to another but they all told them that everything was fine with their baby.

One particular day, when Quiven was eight months old and Karen was feeding him, she noticed he had two white circles in the pupil of one his eyes. They went to hospital immediately, where an ophthalmologist broke their hearts when he told them that their son was blind. For the Ellul family, that was the first big shock. A few days later, MRI and CT scans were carried out and they confirmed that Quiven was blind. However, Johann insisted with the ophthalmologist that they should take their son abroad for more tests because deep down he felt that Quiven had something more serious.

They were then sent to the Royal London hospital, where Quiven was diagnosed with an aggressive cancer in both eyes. On Christmas Eve 2014 the left eye had to be removed and the British doctors started the process to try and save the right eye. Quiven began receiving chemotherapy but it was all in vain.

Karen and Johann then had to take what they described as the toughest decision of their life: a choice of either having the second eye removed or losing their son. The obvious choice for Karen and Johann was to have Quiven back home with his brother and sister who in their own world were also suffering in silence. The mother told us that, “we always hoped that at least we could save one eye but that did not happen.” Before Quiven had surgery on his right eye, his parents asked the surgeon if they could each give him one of their eyes, but he told them that this was not possible.

So Quiven had a second operation to remove his right eye. Although both of his eyes had been remove, another operation was needed for him to have artificial eyes implanted, a procedure which took place a few weeks later at Moorefields Eye Hospital.

During their ordeal, the Ellul family received a great deal of support – especially from Puttinu Cares, with the organisation providing them with accommodation in London, and the Malta Community Chest Fund.

Karen said that the joy of having a third baby was soon overshadowed by the ordeal that the family had to go through. “We were existing, not living, during those tumultuous weeks, and we were angry that all this had happened to the youngest member of our family”, said his parents. They say how hard it is to go into a children’s shop with Quiven when he is unable to see the various toys and cartoon characters that are surrounding him.

Before he lost his sight, when Karen used to take her little boy for walks in his pushchair, people used to stop her and say: “How beautiful his eyes are. They’re big and black”. Karen said that when he was a baby, Quiven never took his eyes off her and how much more all this hurts because he will never see her or his father again. “Nowadays, he has to touch our hands to be sure that we are there.”

But, of course, they say that every cloud has a silver lining. More than a year has passed since the surgery and Quiven is showing how intelligent and independent he wants to be. In fact, Johann said that in the family we have: “A daughter, a son and an angel.” Sometimes he does things that surprise his family and puts a smile on their faces.

Johann said that Quiven is so independent that he goes to his grandparents, who live in the same road as the Ellul family, and always finds the correct door on his own. Something else he can do is to open a cupboard and get the exact item that his parents have asked him to get for them. Just by touching someone, Quiven is able to distinguish who the person is and will call out his or her name.

On Good Friday, Xarabank will be dedicating its entire programme to collecting money for Puttinu Cares.