Dialog Box

Children's Tumour Foundation of Australia

Bethany's 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 at age 2, Bethany found herself isolated by her symptoms during her school years. She had coffee-coloured spots, as well as growths on her face and body. 

School was a constant challenge for Bethany as she was taunted daily for her buck teeth, glasses and neurofibromas. 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?” 

Her parents raised complaints with the school, but did not find any resolution so Bethany dropped out at the end of Year 11. 

As she entered adulthood, Bethany became convinced she would remain isolated and alone for the rest of her life. After a period of having trouble finding a job, she found work at an op shop run by community charity called 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. From their first meeting, Paul showed her love, joy and happiness.  “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,’ she told her Nan, Marie, after their wedding.

Unfortunately, Paul had thyroid cancer and after a ten year long struggle to overcome the disease, lost his battle in 2014. Bethany and her Mum were by his side throughout. 

Bethany was devastated by the loss of her soulmate, but was also grateful for the years she spent with Paul, learning to love herself - NF and all.  “He’s the man who made me feel beautiful,” says Bethany.  

Bethany was able to pick up the pieces with the support from her colleagues at the childcare centre where she was working. “I owe them a lot,” says Bethany “I wouldn’t have had half the strength if I never had their support.” 

Having NF has been a challenge for Bethany – physically, socially and emotionally. Like many with NF, she has faced bullies and lived with a lack of confidence and self-esteem. Paul’s acceptance and understanding paved the way for self-assurance 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. 

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.”  

After Paul’s death, Bethany understood the importance of reaching out and connecting with others as a way of dealing with her grief. She sought out and became Pen Pals with many friends, in particular, Le-mar, who supported her on a daily basis. Bethany also joined a small support group and engaged a community support service with a case worker, Michelle. Michelle and the service have enabled Bethany to qualify for the NDIS and have also been assisting her with community access and services. 

Bethany has a Toy Poodle called Lulu and was encouraged by Michelle to have her recognised as an assistance dog. Whilst Lulu has changed Bethany’s life, there have been difficulties with the acceptance of others. The local bus company repeatedly refused to allow Lulu to board the bus (despite holding Assistance Dog status).

Bethany drew on her strength and resilience and took the matter to the anti-discrimination board and won. 

Bethany and Lulu are still inseparable and provide love and inspiration to the local community. In 2017, Bethany’s friend Le-mar introduced her to a young man called Greg. 

They fell in love and are currently living together in Sydney. 

“I’m so blessed a second chance. Like Paul, Greg never sees me as my lumps and was incredibly supportive, caring and funny. We saved each other.”