Bethany’s NF Story
Bethany’s NF Story
From a young age Bethany knew she was different. She was a happy and bubbly child but found it difficult to make friends and was often bullied. Diagnosed with NF1, Bethany found herself isolated by her symptoms – coffee-coloured spots and growths on her face and body. As she entered adulthood Bethany became convinced she would remain isolated and alone for the rest of her life, until she met Paul who showed her love, joy and happiness.
School was a constant challenge for Bethany who was taunted daily for her buck teeth, glasses and skin growths.
“Girls would yell, ‘You’re so ugly you disgust me!’, ‘Fish face!’ and ‘You’ll never get a boyfriend,’” says Bethany. “It made me feel worthless. I didn’t understand. I was happy and bubbly and always nice to the other kids. What did it matter if I was ugly?”
Fortunately Bethany had the support of her family. Her parents raised complaints with the school, her sisters defended her on the playground, and she had a friend who supported her, Amanda, but it eventually became too much to handle. Bethany dropped out of school at the end of Year 11 and after having trouble finding an admin job found work at an op shop run by community charity The WASH (Women’s Activities and Self Help) House.
While working at The WASH House Bethany met Paul Marinello, a volunteer driver for the charity who had thyroid cancer.
“He didn’t stare or do a double take. He just looked me right in the eye and smiled,” says Bethany.
Bethany and Paul quickly became friends and married in 2004.
“When I was with Paul I forgot all about my condition,” says Bethany. “‘There was someone for me after all’ I told my nan, Marie, after our wedding.”
A year after their wedding Bethany fell pregnant, but their joy was short-lived.
“My doctor told us our child would likely have a severe form of NF. It shattered me,” says Bethany. “I didn’t want our little girl to get bullied like I’d been, but maybe it wasn’t meant to be because I lost the baby early on.”
During this time Paul’s cancer had spread, first to his lymph nodes, then to his liver, and eventually to his bones. Paul remained positive throughout his ordeal, but his condition worsened in June 2013, and he passed away the following May, leaving Bethany devastated albeit grateful for the years she spent learning to love herself with Paul, NF and all.
“He’s the man who made me feel beautiful,” says Bethany.
Fortunately Bethany has been able to lean on her family and colleagues at GoodStart Oakhurst where she works as a childcare worker for support.
“My mum has been my rock, and Marie, Ferda, Gillian and Melissa at GoodStart have supported me and Paul through the years. I owe them a lot,” says Bethany. “I wouldn’t have had half the strength if I never had their support.”
Bethany is currently studying a Diploma in Children’s Services and has joined a ‘Writing from the Heart’ group where she has made plenty of new friendships.
Having NF has been a challenge for Bethany, socially and emotionally, facing bullies and living with a lack of confidence and self-esteem. Paul’s acceptance and understanding have paved the way for confidence and self-love for Bethany. She knows that others, too, can find their source of strength, support and inspiration to help them overcome their own NF challenges.
“Some people, such as those girls at school, might say I’m too ugly to find love, but thanks to Paul that’s not how I think of myself now,” says Bethany. “Paul showed me that despite all the hurtful things my childhood tormentors said, I was worth loving. I’m the confident woman I am today because of him.”