‘My dangerous wedding day’

oay Dijkgraaf faced a much bigger battle than most brides to make sure she felt beautiful on her big day. Born with a rare condition called Epidermolysis Bullosa (EB), which makes her skin as thin as rice paper – and just as fragile – the 40-year-old had to go to extraordinary lengths to make sure her wedding was picture perfect. oay knew that even activities that most brides take for granted, like wearing high heels and having their hair styled, could leave her with severe blisters and scars as bad as those left by third-degree burns. Although a quick registry office wedding would have been safer for oay, who has been hospitalised many times with the incurable genetic disorder, she wasn’t going to let anything stop her from having the ceremony of her dreams.

“I wanted to feel like a normal bride,” says oay. “I didn’t want to think about my condition or how ugly it would make me look. I wanted to look radiant and absolutely beautiful and have everything that every bride should have on their wedding day.” When the Auckland administration assistant met co-worker Coen Dijkgraaf (42) last year, she had given up on thoughts of romance because of the scars caused by her condition. But the two quickly fell head over heels in love and felt like such a perfect match that Coen asked oay to marry him after just three months.

However, Coen’s plans for a memorable proposal were jeopardised when oay became unwell and had to go into hospital. “oay was supposed to be staying in hospital, as her skin was severely infected, but I was determined to ask her, and I whisked her away for a bit,” he grins. oay had no hesitation in saying yes to Coen’s proposal. “He had a very calming effect on me from the start, and it’s important for me to live with minimal stress, because even getting anxious can cause welts on my skin,” she explains. After all the engagement excitement, the lovebirds had a wedding to plan, and oay knew she faced huge challenges. She is supposed to avoid wearing high heels as the pressure on her feet can cause wounds but oay was determined to try just for this one special day “I went to the physiotherapist to help me walk in heels without damage and I practised for a week, walking the distance down aisle in my bridal shoes,” she says.

“I had to be so careful because even thin ankle straps can rip through my skin.” Getting her hair done was also an event that put her health in serious jeopardy. oay’s skin is so thin that the droplets from hairspray can corrode her skin. She had to be carefully shielded throughout the whole process, and when the veil was put onto her head, great care was taken not to scratch her scalp. Even choosing a sleeveless dress was a heart-wrenching decision for oay, who has worn long sleeves and pants all her life to cover the blisters and scars. But happily oay was able to find a make-up artist who could cover the marks on her skin with gently-applied, non-corrosive beauty products. Finally, after all her efforts, oay finally walked down the aisle, looking more beautiful than she could have imagined, and with her young daughter Elizabeth (eight) at her side for support.

“It was extremely surreal,” remembers oay, with a smile. “It was like I was in a happy dream and having this out-of-body experience.” oay knows just how deadly the disorder can be, having lost her sister Joyce (30) to EB in 1993. But she believes it was worth taking the risk to have the wedding day she had always wanted. She has also not ruled out having more children. Although daughter Elizabeth does not suffer from EB, Coen and oay are having genetic tests to determine whether their children would have the condition. Rather than taking a toll on her body, being pregnant actually made her health improve, oay says. “When I was carrying Elizabeth I was glowing. I made sure I was well rested and my skin, surprisingly, didn’t blister as much.” Although oay will experience chronic pain all her life, she says refuses to let it affect the happy life she now has with Coen.