Morgan's Story with NF - From Silence to Strength
Age at diagnosis: 2
Current age: 35
Diagnosed with: Neurofibromatosis Type 1
My name is Morgan. I’m 35 years old and living with Neurofibromatosis Type 1 (NF1)—a spontaneous genetic mutation with no family history.
For most of my life, I kept my diagnosis to myself. I wasn’t sure what it meant for me, or how others would see it. Even sharing with people I trusted felt uncomfortable.
Although I was diagnosed at age two, I feel my NF journey truly began in 2016, when I met my now-wife, Sharni. It took me a year to open up to her. The vulnerability I felt was overwhelming—but her response changed everything. She was all in, without hesitation. That moment marked the beginning of acceptance for me—and the start of our journey.
In 2024, we faced another pivotal chapter: the birth of our son, Noah, who also has NF1. We had done everything we could—doctors, tests, and thousands of dollars spent—to avoid passing it on. But despite our efforts, NF is part of his story too.
Thankfully, Noah is doing well and developing healthily. We’re monitoring him closely and doing everything we can to give him the best start in life. He’s now our greatest inspiration.
As a child, I didn’t realise my life was different. My parents didn’t tell me I had NF until I was 13. Suddenly, my school struggles, years of speech therapy, and learning difficulties made sense.
Today, my medical history includes spinal issues, hearing and vision loss, benign tumours, and more.
But despite the challenges, I’ve graduated university, led teams, travelled the country—and most importantly, found love and purpose.
Now, I’m proud to share my story and advocate for others living with NF, as well as their families and carers. Through the Children’s Tumour Foundation’s Community Advisory Panel, I’m working toward:
- Greater awareness and understanding of NF
- Improved healthcare access for regional and remote communities
- Reducing the stigma around mental health
- Empowering others to take control of their journey
NF is part of my life—but it doesn’t define me. Acceptance starts with you — and I’m here to help others take that step, too.
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