Pedal for Progress

My name is Mario. I am 17 years old and currently studying for my A-levels. When my dad, Albert-Guifré, was 20, he was diagnosed with NF2, a condition he inherited from his mother. My sister Gisela and my uncle Oriol also share this condition.

Last November, my dad sadly passed away from NF2. My dad was under the John Radcliffe Hospital in Oxford and had been in contact with NTUK over the years. In his memory, we decided to cycle across the Pyrenees to raise funds for Nerve Tumours UK.

Whilst I am struggling with the death of my dad, the deterioration of my dad's health over the years as a consequence of the symptoms caused by NF2 has left a much bigger mark on me. Since my dad was already deaf when I was born, and shortly after his ability to walk was impaired, communicating with him as a young child was confusing. My dad told me that when I was three years old I made a walking stick out of paper to try and help him walk; although he pretended that it worked, the flimsy paper wasn’t able to support much weight.

I communicated with my dad mainly using finger spelling since neither of us knew sign language. Although this worked, conveying longer sentences took a while and we ended up coming up with signs to say words that we often used even though they were not the official signs. 

The impact that NF2 has had on my family is hard for me to contemplate. The constant challenge and fear of your loved ones’ condition deteriorating is draining. The effect on my family when my dad became deaf was significant and eventually when I was six my parents divorced, and my dad ended up moving out and living alone. 

The pain I felt every week when I visited my dad and saw him alone, each week slightly frailer, is difficult to explain. I felt he lacked support, as if he had been forgotten and that other than my sister and myself, he was by himself. As we grew up and his condition deteriorated, my sister and I ended up helping my dad more and more each time we visited him, like cooking him lunch or dinner.

This shift in our relationship is something that I continue to think about. When I was six and my sister was eight, my dad would watch over us and show me how to use his tools in the garage, whereas last year I would take him to the city centre to get lunch, I would help him through the airport to travel to Barcelona, or would cook dinner for him.

One thing I will never forget about my dad was his optimism and drive. He never complained or pitied himself. He made the most of what he could do, was grateful for what he had, and was proud of his achievements. My uncle Oriol shares this same spirit.

One of the most upsetting parts of seeing my dad’s symptoms develop was the lack of day-to-day support he had. This is why I am dedicated to supporting Nerve Tumours UK, an inspiring charity that aims to improve the lives of those affected by Neurofibromatosis. They provide a helpline, support, advice, facilitate and promote research, and act as the authoritative voice of NF in the UK.

In December, I came up with the idea of cycling a large distance to fundraise for the charity. With the support of my uncle Jeremy Bogush and my cousin Harvey Bogush, we decided to cycle from Toulouse to Barcelona via Portbou—a 500 km route across the Pyrenees. We have just completed this journey and are so chuffed with the support we’ve received on our fundraising page. Thanks to everyone’s incredible generosity, we have raised a significant amount for Nerve Tumours UK.

The cycle was an amazing experience and we all enjoyed some truly incredible moments. Some notable ones were hitting the French coast on day 3, the incredible views over the Pyrenees mountains, crossing the country border into Portbou, and of course reaching the finish point of the Sagrada Familia in Barcelona – where everyone was waiting to congratulate us!

Our story so far has been an absolute success which will continue with next year with another cycle with more people participating to continue to raise awareness of NF!