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 issues 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. However in June 1999 Bethany became a besotted aunty to her sister’s  baby Mitchell, “I was so full of love with this baby boy in my life”

Bethany met Paul Marinello - a volunteer driver for the charity where she worked. 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 started dating shortly thereafter. In the next year Bethany was able to expand her happiness and devotion to a beautiful niece (Maddy) and nephew (Harry). Her joy continued when she married Paul in 2004 surrounded by family and friends.

Unfortunately, Paul had thyroid cancer and after a sixteen year long struggle to overcome the disease, lost his battle in 2014.

Before he died, Paul was able to meet the newest addition to the family - niece Ava. Bethany and her Mum were by his side throughout his illness. Bethany was devastated by her loss, but with courage and strength continued.

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 daily. 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, but 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 made a small change, so others never have to feel and be treated the way she was.

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. 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.

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.

“We both hit it off straight away”. Greg became Bethany’s carer, and she also has had the same brilliant support workers Vamio and Michelle for six years.

The relationship with Greg grew from strength to strength. They fell in love and are currently living together in Sydney, with their two fur babies Lulu and Beau.

They have a shared love of Dr Who, Star Wars, Marvel and DC Movies. The last two years has been a struggle with Bethany having some NF complications and the ongoing challenges with lockdown and having covid.

“I’m so blessed to have a second chance. Greg and a handful of my close friends don’t see my lumps. They are incredibly supportive. Greg and I saved each other. Greg is a caring, loving and supportive man. He has been a wonderful, positive person in my life”

On the 6th 2022 Bethany (with assistance from Lulu and Beau) took a bit of a risk and proposed to Greg. Greg said yes! They are planning their wedding for September 2023.