Ahead of a BBC NI documentary showing the lead-up to her big day, Janine Howard from Belfast, tells Una Brankin about the rare flesh-eating virus that left her with a severe facial disfigurement, falling in love at first sight, and why she was determined to get her smile back before tying the knot
She is withdrawn at first, burrowed down into her parka jacket and trying to shield the right side of her face with her shoulder. It's a physical defence mechanism against the verbal abuse she has endured all her life, the taunts and cruel remarks about her scars and hollows caused by a rare flesh-eating virus she contracted in hospital, while undergoing chemotherapy for childhood leukaemia, at only three years old.
But as she begins to relax, over a coffee in a city centre hotel, Janine Howard becomes vivacious and turns to address me head-on - which is exactly what an independent film company has persuaded her to do for their cameras, in what has to be one of the most moving and ultimately inspiring documentaries made for BBC Northern Ireland.
The film crew began shooting the programme after the Belfast Telegraph ran a feature in the late summer of 2018 on Janine's dreams for a fairytale wedding to her charming, long-time fiancé Matthew Light, who has spent the last 10 years caring for Janine as she has battled various health problems, including anxiety and depression, in their run down council house in the New Lodge.
The programme, Saving Face, follows Janine's progress from the fittings for her ball gown-style wedding dress - generously donated by a local designer - to her appointments with a facial reconstruction surgeon, and her wedding day at Conway Mill and the old Crumlin Road Gaol in Belfast.
As a result of Janine's interview with this newspaper, she was offered flowers, hair and make-up, a wedding planning service and wedding car worth £30,000 for her big day last October.
"It was strange, having a camera in your face constantly," says Janine. "It made me more nervous about the wedding and all that, but I did it to ask the bullies to leave me in peace.
"They will shout anything they know will get to you - spastic face, stupid face. Pastie face is the latest one. I just hope that by doing the documentary, it'll help other people being bullied to speak out. Don't bottle it up. The more you do, the harder the pressures become."
Saving Face opens with poignant footage of Janine walking alone through town, muffled up by a scarf and her ever-present baseball cap, with her earphones in to drown out any potential abuse.
Her mother Sylvia speaks of the terrible hurt caused to her daughter, whom she describes as a good girl who has had her problems, but remains kind and thoughtful. And she describes the horror of seeing her three-year-old Janine's malodorous, necrotising flesh - from her right eyelid, cheek and upper lip - "peel away with the bandage" when her dressings were removed in hospital.
"It was horrendous," she recalls. "I ran and the nurse ran. I beat her to the toilet. I remember thinking, 'What sort of life is she going to have? Will anyone ever love her?'
"We were out shopping one time and someone came right up to us and said, 'Oh my God, look at her'. How can people be so rude and hurtful? On the other end of those words is this wee girl."
Janine remembers hiding behind her mother and the clothes rails when they went out shopping.
But she was determined to go out and play with her friends from school in north Belfast, where she did well in English and French.
Her school friends - one of whom was her chief bridesmaid - provided a protective, tight-knit circle around her. That role has since been taken on by Matthew, a family friend she has known from her youth. In the documentary, he comes across as an all-round good guy, towering above the tiny Janine and laughing off her gentle chiding when she corrects him over the length of their engagement.
They began their romance over a decade ago, when he stopped to talk to Janine at a bus stop on the Crumlin Road.
"For me, it was love at first sight with Matthew - there's something about his smile and his eyes," she relates in Saving Face. "We argue, but he's always there for me. He wouldn't stand and let anyone make fun of me."
Now 35, Janine thought she'd never get married. When the prospect became real, all she wanted was to be able to smile for her wedding pictures.
Due to her facial disfigurement on one side, she can only manage the merest upturn of the corner of her mouth on the other side. She is also facing the prospect of losing all her teeth, as a result of the deterioration of her gums, due to the original infection.
The cameras follow Janine as she goes to see her consultant at the Ulster Hospital, and she asks him if there is anything he can do to help her "look human, just more normal". He explains the intricacies of the "plumbing" involved with facial reconstruction, to insert tissue into the hollow of her cheek and to replace her jaw bone, but promises to look into it.
Unfortunately, he concludes that he's unable to proceed. Janine is left devastated, but her fiance Matthew is unfazed.
"It would have been nice for her to be able to eat something nice at the wedding reception, a wee steak or something," he says.
"But it makes no difference to me how she looks. She's still going to look beautiful when she walks down the aisle."
Like most brides, Janine lost weight before her big day, against her bespoke bridal designer's strict instructions.
Her only regret over the occasion was the absence of her father, who died following a blood clot last year.
She is still grieving for him.
"I feel his presence around me, in a good way," she tells me.
"I know it was him that got things moving with the housing to get us our nice new flat in the Oldpark, near Mum. I couldn't have stayed in that other damp, falling-down house a minute longer. I've got his face tattooed on one arm and a wee tribute to him on the other, so I feel he's always with me.
"And I had a piece of his denim shirt sewn into a locket and put into the underskirt of my wedding dress. I loved it.
"I wanted a strapless ball-gown. As I said in the programme, I did feel like a princess for the day."
As for the future, Janine, who has two teenage daughters (aged 13 and 14) from a previous relationship, is not ruling out having children with Matthew, if they eventually get a bigger house and if a persistent problem with an ovarian cyst can be overcome.
Some have suggested that she should write her life story but she laughs off the idea - "although I was good at English at school", she reminds me.
The thought of travel never seems to enter her head. She spent her wedding night in a Crumlin Road hotel before returning to the New Lodge.
"I'm lucky to have the support of my family and friends around me," she concludes. "There's even a wee lad nearby who wants to write a song about me! Ones like him know I may look different but I'm the same as everybody else inside.
"The abuse... it just hurts.
"But it's a new year, a new start, a new flat. I don't want to be taking tablets for anxiety. I'm going to fight it. I know I'm different but, to be honest, I'm happy to be me."
Janine was just two years old when she was diagnosed with leukaemia. During treatment for the condition, she developed the rare life-threatening condition necrotising fasciitis, also known as the flesh-eating disease.
Surgeons removed large parts of the soft tissue in her face. It's a disease few survive. But despite the trauma, Janine survived.
Now in her 30s, Janine has gone through years of intensive surgical procedures to repair the damage to her face; damage which prevents her from smiling and also affects her speech.
BBC NI's True North: Saving Face follows Janine as she makes preparations for her upcoming nuptials.
She talks about her life, the surgical treatments she has received and the difficulties she has faced her entire adult life, including the cruel taunts she receives because of how she looks.
As Janine and her partner Matthew plan their wedding, they are met with some generosity from local businesses who want to help. But as the day approaches Janine has just one wish - to get her smile back. She is hoping doctors may be able to reverse some of the effects of her facial scarring through reconstructive surgery, and hopefully restore her smile for her wedding photographs.
True North: Saving Face is made by Triplevision Productions for BBC Northern Ireland. It will be broadcast on Monday, January 27 on BBC One Northern Ireland at 10.35pm, and will be available on BBC iPlayer.