Mia-Louise's Story with NF1

Age at diagnosis: 18 Months

Current age: 21

Diagnosed with: Neurofibromatosis Type 1

My name is Mia-Louise Donnell, and I was diagnosed with Neurofibromatosis Type 1 at 18 months old due my the café au lait spots. However, I was suspected to have it earlier due to both my mother and Grandfather having NF. As of 2025 I am currently 21 years old.

Although I had family members with NF, I often felt quite lonely as I didn’t have anyone my own age that I could relate to or could understand what I was going through. It wasn't until I left high school and connected with the Children's Tumour Foundation and met people my age with NF, some of whom have become my lifelong friends.

Growing up with NF often meant frequent appointments and check-ups, mostly related to my optic nerve tumour behind my right eye. This would consist of MRIs in which I remember having a needle which was for contrast as well as wearing a big helmet with a mirror that would allow me to watch movies. I also had frequent eye appointments up until the age of 16, which entailed extremely painful eyedrops, which I sometimes had to be held down for them to be put in. They made everything blurry and my eyes super sensitive to light which meant there was nothing I could do. I wasn't able to read or play on my phone, couldn't go outside without the sun hurting my eyes. Given the fact that I was diagnosed with ADHD a couple of years later, shows why I struggled with this so much. Thankfully the tumour has remained stable as there was worry if the tumour grew, I could have of become blind in that eye.  

One of my earliest memories growing up with NF was involving school where I remember putting my hand up when I first met my primary school teacher for that year asking if they knew about my NF. I then often had to explain a condition, that I could barely understand let alone pronounce. This continued throughout primary school and high school.  It is still often hard to explain what NF is to people when I say I have it, especially as it affects everyone differently.  

This is something I struggled with the most...as it meant I often don’t know how it affects me.  I know the basics but not who I would be without it. I don’t know where I begin, and my NF stops.  I often struggle with spelling, punctuation, grammar and handwriting and other hand-eye coordinator tasks. This has often led me to wonder who I would be without my NF, if I would be smarter, better at sports, have prettier handwriting or be more coordinated. It does not help that I also struggle with anxiety and depression.  

I also have quite a few neurofibromas. I had one removed in 2022 from my left breast that was about half a mandarin in size, due to worry about it being a plexiform neurofibroma. It also often caused a lot of discomfort due to it being along the bra line. I have also had 4 other neurofibromas removed from my skin. All though not always, I do often feel insecure about my neurofibromas on my skin.  

I also have issues involving frequent headaches from the age of 6, as well as shoulder, neck and back pain which often gets worse as I get older. This is often hard as I know body aches come with age, but I am also struggling with it a lot now.  

I also know that I am lucky, more than some when it comes to NF. My Mum was often denied a lot of experiences growing up due to her NF, and my parents wanted to make sure this wouldn't’ happen to me. That I could live a normal life, despite my NF. This didn’t however help the occasional feeling of being a burden due to my consistent appointments or worry about every single little lump on my skin. I often wondered if I was causing financial stress with all my problems or taking attention away from my older brother.  

Despite all my struggles with NF I was able to graduate High School in 2021 despite the struggle of a pandemic in my final two years and go on to attend University in which I am currently in my fourth year.