Ace’s Story – Navigating Life With NF1

I was diagnosed with NF Type 1 at 3 years old, back in America, after doctors noticed my café au lait spots. I was also diagnosed with autism at the same time. I’m fortunate to not have too many complications but it has left me with a benign brain tumour. I have many friends I met through having NF, who haven’t been as lucky. With many of them, they had to spend large amounts of their childhood in hospitals and having surgeries. I’d just have yearly check-ups that would involve spending two nights away from home to get a yearly optometrist appointment to look over my lisch nodules, and an MRI to make sure my brain tumour is stable.

Shortly after puberty these became extended to every two years, and now it’s been a good few since I had an MRI. I’ve seen my local specialist once or twice, as despite living in Wales for 7 years, I still struggle with navigating the NHS, plus being in full time work and sometimes university, I don’t have enough hours or flexibility to do more frequent checkups.

It’s nice to know I have that support through NTUK for when I am able to get that rare free time. It’s also nice to be able to connect with others and their family showing all of us that we’re not alone. NTUK is a great resource for connecting with others with NF and getting linked into the support you may need whether newly diagnosed or overdue for a check-up. I know in my experience it fell off after a certain age and it can be tough getting back. 

Thankfully my case is very mild so the biggest impact on my life would probably be the learning difficulties that can be comorbid with having NF. So school was always a struggle, I’ve been to 5 different universities in my 11 years since I graduated from High School. There’s nothing to be ashamed about, the time or school just never was quite right.  I’ve been working as a chef since 2022 while going to university for a degree in Arts and Humanities. Previously I was studying archaeology, but had to take time off for personal reasons. Starting in the autumn though I’m going to be going to Open University for a degree in classical studies and history. 

Despite these limitations, or rather differences, I never let having NF stop me. And I enjoy pushing myself to the limit. I do what people like me (also accounting for me being autistic) shouldn’t be able to do. At least, that is, based on societal expectations. This includes moving abroad from the United States at 22 for my father’s hometown of Cardiff, Wales. But more recently I found and fell in love with running.

It all started back in 2022 when my mate did the Cardiff Half Marathon, and I impulsively signed up having not ran since the “dreaded mile” in high school. Running wasn’t ever something I enjoyed being the most unathletic person you’d ever meet. Also tumours cause chronic pain, and I’ve got a fair few in my legs, too.

I did my first 5k on January 1st 2023, back in America, and barely ran half of it. I was a mess but I completed it in 29:54 minutes, which was still an amazing accomplishment. Then I didn’t run again until May when I joined a local club to force myself to run more. May 17, 2023 was also the day when I impulsively applied to run for NTUK in the London marathon in April 2024. I hadn’t been running long, but to run a marathon before 30, for such an important charity this close to me, was a no brainer. And it was a personal challenge to show I could do it.

Part of my training included a 10k and two half marathons, both of which were amazing. By January 2024 training was in full swing, and on 1 January 2024, a mere year after my first official run and 5k, I ran a 5k in 24:14 minutes! Over 5:30 minutes faster than my first 5k. That was exhilarating. 

But to run London? That was an absolute amazing experience. The atmosphere, meeting NTUK staff and fellow runners. Making lifelong friends. It’s an experience I soon won’t forget, and I’m hoping to repeat in the future. I’m still running as much as I can. After London I ran a 10k in Helsinki a mere 6 days after the full marathon. And I jetted off to Iceland to run a half marathon at the end of August, and the Cardiff 10k and half marathon in September and October respectively - hometown favourites. 

Running has given me confidence that I can do anything I set my mind to. That I shouldn’t let my differences hold me back. I’m not only running for myself, I’m running in memory of my friends, Bryce, Nick, and Evan, and in honour of my friends Bee, Liza, Claire, and Dylan back in the USA. London was my first marathon and I have big plans to complete the other 5 stars (NYC, Chicago, Tokyo, Boston and Berlin).