Tristan’s Story: Hope & Resilience

Hey, I'm Tristan. My journey with Neurofibromatosis Type 1 (NF1) started before I even knew it had a name. I was officially diagnosed back in 2011 by a paediatric neurologist in South Africa, but NF1 has been a part of me since birth. I’ve had a pretty tough ride—walking and talking were delayed, and I needed occupational therapy to improve my motor skills. School wasn’t much easier either, with some learning challenges along the way.

NF1 runs in my family, passed down from my dad, who has the same condition. Growing up, I had all the classic signs: café au lait spots, freckling, and later on, tumours called fibromas. But the real tough stuff started when I was just 4 years old.

A Rough Start

We were lucky to get a referral to a neurosurgeon in South Africa who specialized in bone cancer and deformities. There weren’t any doctors who knew much about NF in the country—it’s super rare there. We saw Professor Hoskings, who had a handful of NF patients and really understood what I was going through. The doctors in South Africa had never heard of NF1, and there was no clinic dedicated to it.

When I was 4, I had my first major surgery to remove a 6cm fibroma from my left tibia, which had to be replaced with a titanium rod. That surgery kept me in a wheelchair for six weeks, followed by a cast and crutches. The recovery was tough, but it was just the beginning. Over the years, I’ve had more than eight surgeries, including removing fibromas and fixing a leg-length discrepancy.

I’ve had fibromas grow on the bottom of my foot, which made walking painful. At one point, I was so frustrated that I begged my doctor to amputate my leg. However, Prof. Hoskings, who understood how complicated NF1 is, explained that amputation could lead to even worse complications. He even used my case as a study at a symposium in Europe. After one of my surgeries, I ended up walking on a fractured bone. My doctor was completely puzzled. He even had to do a live bone transfer, taking bone from my hip to fix my leg. Despite all that, I refused to give up. My mom calls me her "NF warrior," and I’ve worked hard to live up to that name.

Struggling in School

School was a real struggle because of my learning challenges. I didn’t pass some of my subjects, even with the extra help of a scribe and reader. My mom had to pay extra for it, and I was held back twice - once in South Africa and once in Nigeria, where we lived for five years. It was demotivating, especially because the schools in South Africa weren’t great at accommodating kids with physical and mental challenges, unlike in the U.K.

In South Africa, when I was in a wheelchair using crutches, or even just walking with my bulky leg, people would stare at me like I was "different." But things were different when we moved to the U.K., where people are more accepting of mental and physical disabilities.

Finding Strength in Surfing

One of the biggest game-changers for me was adaptive surfing. I was introduced to it by a local organization in Cape Town, and it was honestly therapeutic in ways I didn’t expect. I even entered an adaptive surfing competition and came second! Being out there in the waves made me feel free, confident, and strong like I could do anything.

In Nigeria, people had never heard of NF1, and I had to fly to South Africa for all my surgeries. Even though there are people with NF in Nigeria, they’re often frowned upon because they look different.

A New Chapter in the U.K.

Two years ago, my family and I moved to the U.K. We live in Kent where my parents work, and I go to college. I was referred to the Neurofibromatosis Clinic at Guy’s Hospital in London. This was huge because there wasn’t anything like that back in South Africa. The doctors and nurses at Guy’s, especially Dr. Hersheson and the NF Nurse Team, have been incredible. The moment I walked into that NF clinic, I felt a weight lift off my shoulders. The nurses are so knowledgeable and always quick to respond whenever we have questions. They’ve been amazing!

My mom and I used to spread awareness about NF back in South Africa by doing fun walks, and I’ve spoken at my school since I was 6 years old to raise awareness. It’s nice to know that I’m part of a community now, with support from Nerve Tumours UK, and I’m excited to meet others at their socials and events.

Nerve Tumours UK has been a great support for me, and they have given me so much emotional support and advice on how to navigate my life with NF.  I had never received that kind of support before.  All I can say is, “Bless the Team” and thank you for being on my side, every step of the way and educating other people on what NF is and spreading the word for all of us that have this condition.  It is motivating and re-assuring to know that I am not alone in my journey.

A Big Break: A new treatment for NF1

Dr. Hersheson at Guy’s referred me for treatment on the NHS for a new drug called Selumetinib. It’s a chemotherapy drug designed to shrink non-cancerous NF1 tumours in children. I was only the second child in the U.K. to join the trial, and although it was exciting, it was also nerve-wracking. There’s a 50% chance that the drug could shrink my tumours, so I’m giving it my all for the next 18 months to see if I’m one of the lucky ones.

So far, the results have been life changing. I used to be on the highest dose of nerve pain meds because walking was so painful, but thanks to Selumetinib, I’m completely off pain meds now!

Building My Future

I’m currently in my second year at Hadlow College, studying Animal Management. The teachers are incredibly supportive, helping me work through my learning challenges. My friends have been awesome too—they don’t care about my leg or my surgeries. I’m just one of the gang. I even have Assisted Learning Support at school, and I’ve been getting distinctions in some subjects.

My dream is to become a zoologist and work with endangered animals.

My Message

NF1 doesn’t define who I am—it’s just one part of my story. A story of resilience, hope, and determination. To anyone out there facing their own challenges, remember: you’re stronger than you think. It’s not about the setbacks; it’s about how you rise above them.

Dr Joshua Hersheson

Neurology Consultant and Adult Clinical Lead (National NF1 Clinic  - Guys Hospital)

“I first met Tristan in August 2023 shortly after he moved to the UK from South Africa. It was clear that he had been through a huge amount already with multiple surgeries but still had significant symptoms related to his plexiform neurofibroma in his leg. He is highly articulate and motivated but most importantly, he is very resilient. Fortunately, I was able to refer him for  treatment on the NHS with selumetinib which targets the affected pathways within the cell, caused by his NF1, that drive tumour growth. At the moment this treatment is only available on the NHS for children under the age of 18 and so we were lucky to be able to get him assessed very quickly by my paediatric colleagues (Dr Lascelles and Dr Cadwgan) in our specialist multi-disciplinary selumetinib clinic. He was then seen at the Royal Marden where he continues to receive, and benefit, from the treatment. We hope to be able to offer this to adults in future and allow more of our patients to benefit from such treatments. As well as thanking Tristan for being such an exemplary patient, I would also like to thank all of my team in the NF1 clinic at Guys and the Royal Marsden who have helped and continue to support Tristan with his condition.”

If you have any questions on the treatment mentioned in Tristan’s story, contact our Helpline and speak to our Specialist NF Nurses on 07939 046 030 Monday, Wednesday, Friday 9am to 5pm or email helpline@nervetumours.org.uk