Little Alfi Mjeshtri had just celebrated his fourth birthday when the sickness started. Just three months later, he was dead. Here, his parents Suzanne and Halim tell the touching story of their beloved son, a boy who was taken too soon. Lee Marlow reports
They never contemplated death. All sorts of other things, maybe – a life blighted by hospital visits, perhaps; their little boy not quite being able to do all the things the other little boys could do. But not death. It just didn't seem possible.
It didn't seem right or in any way fair or proper that four-year-old Alfi Mjeshtri should die, in a hospital bed, the tumour in his brain finally consuming even his enormous desire to live.
And yet here we are, a year and a bit later, telling Alfi's story – a story that, by rights, shouldn't have to be told. He should be in school now, playing with his little sister, running around and causing havoc.
Alfi died of a rare brain tumour – a tumour so rare the children's cancer department at Nottingham Queen's Medical Centre had only ever seen two cases of it before.
Why Alfi? No-one knows. Just one of those things, the experts say, in their inadequate way.
He took his final breath in a hospital bed; his mum, Suzanne, on one side and his dad, Halim, on the other.
"We had an agreement with the consultant that he would not switch off Alfi's life support machine as long as there was just a one per cent chance he might live," says Suzanne.
"But that final day, you could see… there was no hope. He had no fight left. We switched the machine off and lay beside him, talking to him, and holding him. I counted his breaths, the seconds between each breath."
The space between each breath grew longer and longer, she remembers. Five seconds. Ten seconds. Seventeen seconds. "And then he was gone," says Suzanne.
Alfi was buried in a Thomas the Tank engine coffin under a Thomas the Tank engine headstone, in Hugglescote cemetery, a short walk from where Suzanne and Halim live, in Crescent Road. Halim goes to the grave every day, twice a day most days. It is festooned with flowers.
Alfi died in December, 2011, a year and three months ago now. It still feels like yesterday, says Suzanne.
People keep telling them they'll get over it and that life goes on and, eventually, the pain will go. They wonder when that will be. It hasn't happened yet, says Halim.
The house is brimming with pictures of their little boy. Pride of place is a big framed shot of Alfi at his uncle's wedding, looking happy and handsome in a white shirt and waistcoat.
"Look how well he looks here," says Suzanne. "Three months later, he was dead. You wouldn't believe a boy who looked like that could die inside three months. We still can't believe it."
So where do you start with the story of a four-year-old boy dying from cancer? Let's start at the beginning, at an M&S packing factory, near Fosse Park, Leicester.
Halim had come to England from Albania, looking for a better life and a more prosperous future. He settled first in Manchester. There wasn't much in the way of work in Manchester – "I always want to work," he says – so he moved to Leicester. He met Suzanne, originally from Nottingham, at work.
They were friends first. "I used to take him places, and show him things," she says. Two months later their friendship turned to love.
They married in 2003, moving from Leicester to Hugglescote, near Coalville, when Halim got a job at what was then the Nestle warehouse in Bardon.
They'd talked about children. They both wanted kids, but it seemed to take forever for it to happen. A date with a fertility expert was set for April, 2007. It was a date they never kept. By February, Suzanne was pregnant with Alfi. He was born two weeks early, on September 22, 2007, weighing 6lbs 7ozs.
He was a good baby; happy, bright, easy-going, funny. He only got upset if you coloured with him and you coloured over the lines and spoilt his picture, laughs Halim.
And then the sickness started. This wasn't just normal toddler sickness. "He was vomiting more or less constantly," says Halim. He describes a depressing scenario of doctor's visits and hospital trips; people who should have known better dismissing him and his panicking parents.
"We wanted to believe them, too," says Halim. "When they said, 'Go home, keep an eye on things – but don't worry' I wanted to do that."
It was preferable, after all, to sitting at home and fearing the worst.
The vomiting continued. Alfi was visibly weakening. More hospitals. More tests. More experts telling them not to worry. "I don't think he looks too bad at all,'' said one doctor.
"We were in the hospital and they were going to discharge him," says Halim. "'Look,' I said, and I grabbed my son from the bed and he couldn't stand up. 'Look at him. Look how poorly he is'."
Finally, they listened. More tests. Suzanne remembers trying to leave the ward that afternoon and the nurses wouldn't let her out. The consultant was coming. He had the test results. Their lives were about to change forever.
The same consultant who wanted to send Alfi home that morning sat them down in his office. "There is no easy way to say this,'' he said. "Your son has a brain tumour.''
They dealt with the news in different ways. Halim went to pieces. He was angry and emotional. Suzanne was calm and numb.
Alfi was transferred to Queen's Medical Centre. It was the end of September, 2007. Alfi had just turned four. They operated on his brain to relieve the pressure that was beginning to build at the back of his head and to determine if the tumour was benign or malignant, and if it was spreading.
After the op, Alfi seemed to perk up. He kept his food down. He was chatty and responsive, back to his old self almost, says Suzanne.
"I remember a girl in the same ward with a brain tumour. She was bed- bound, hooked up to all sorts of machines and wires. We felt so sorry for her and her family."
That girl survived. Alfi – walking round the ward, charming the nurses – didn't make it. Work that one out, says Suzanne. The tumour was cancerous; a rare, and fast-growing cancer – medulloblastoma anaplastic metastatic, a horrible collision of virtually unpronounceable vowels and consonants.
Despite his early progress, Alfi was seriously ill. His cancer was spreading to his spine. Despite the chemotherapy, the brain tumour was returning.
"I never thought he would die," says Suzanne, "not until the final day."
There was another operation. He'd had so many, says Suzanne. They wanted to put a shunt in his chest so they could treat him with a more powerful chemotherapy. As they waited outside the operating theatre, he said to Halim that he wanted another sister.
"You've got a sister," she said. "You've got Isabel."
"No," he said. "I want another one."
Suzanne thought little more of it. "And yet that was the last time I spoke to him," she says.
After the operation, Alfi suffered a huge seizure. They took him to intensive care but, slowly, his body was closing down. It soon became clear he wasn't going to make it.
"We switched his life support machine off and lay with him," says Suzanne. It felt odd, to be in his room without the constant beeping of the machines. All I could hear was his breath and the gaps between his breath getting longer and longer."
Alfi Mjeshtri died at 2.45am on Thursday, December 1, 2011. His little sister, Isabel, was staying with Halim's brother. She woke at precisely 2.45 that morning, crying, asking for Alfi.
They don't know they managed to get through the next few days, the funeral, the huge crowd of people who gathered at their house, walking down the street, behind the car that carried their son's coffin to the cemetery.
"We didn't really know what to say to each other," says Suzanne.
"We dealt with it differently. I couldn't cry for weeks. I remember seeing people crying at the funeral and thinking: 'I want to cry – why can't I cry'?"
She went back to work. It was for the best, she reasoned; it would occupy her mind, keep her busy. And then the crying started. Briefly at first, then every day. They had to sign her off.
Halim, meanwhile, went to pieces. "I saw a psychiatrist for a while, but she didn't help. What could she say that would help me?"
His GP prescribed anti-depressants. That didn't work, either. "It was like switching the lights off – I couldn't feel anything. It felt wrong, I wanted to feel things. I missed my son."
He was off work for two months. "I am still off now, in my head," he says.
It still feels like it happened yesterday, last week. The grief is still big and raw. Alfi's presence, his memory, is vivid. They still feel cheated. Why did this happen? Why did it happen to Little Alfi? They doubt that feeling will ever go.
There's a new purpose now, though. Roselina was born in January. A little girl. Another sister, just like her brother had said. "She's the little sister that Alfi wanted," says Suzanne.
He'd have liked that. • Work colleagues of Halim's at the Eddie Stobart warehouse in Bardon are planning to walk 125 miles from York to Coalville in five days to raise money for children's brain tumour research.
Peter Taylor, first line manager at the Bardon depot and one of the eight men involved in the walk, said they wanted to do something to raise funds and awareness.
"Halim has been here for a long time and we all like him. When Alfi died, it touched everyone," says Peter. "We wanted to help. We thought this was a good way of doing that."
Money raised will go towards the Children's Brain Tumour Research in Nottingham.
To donate, visit:
www.justgiving.com/Walk-For-Alfi![‘Look how well Alfi looks in this picture. Three months later, he was dead...']( "‘Look how well Alfi looks in this picture. Three months later, he was dead...'")
