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Frederik De Nassau - The Lily Foundation

I was about 14 when I started to feel ill. It was brought to my parent’s attention by a teacher that my symptoms for Dyspraxia were actually getting worse, not better. When my illness struck, it was really hard. My parents did a lot of research to try to figure out what was making me so sick, it was very painful to see them so full of anxiety.

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We visited a hospital here in Switzerland, we left feeling still none the wiser, annoyed that they kept running the same test. I have since been to lots of hospitals and seen lots of doctors for my illness; Boston, Ohio, Lausanne, Newcastle and Paris. It is really annoying and sometimes it is a lot for me. I have had about 11 surgeries. It was in Paris that I finally found out about my diagnosis of PolG Mitochondrial Disease. It felt really horrible. For the first 5 months of my diagnosis, I hated it and I hated being in Paris. I kept seeing my parents stressed out and this made stressed me out. They worked really hard to research my disease and that made me happy because it distracted them.

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My first year with Mito was annoying and upsetting. I was sad, depressed and I really couldn’t handle it. I had to learn to adapt. It was during the second year that I started to try and understand my disease. After the third year, I just accepted that this disease is a part of me. The more I have learnt about myself and my disease over the last few years, the more in control I have felt. I remember waking up one day and deciding to stop being lazy, I wanted to be more independent. This was made a lot more difficult when I had to leave St. George’s due to my illness, that was really sad. I really liked my teachers and they were always helpful and funny, I learnt a lot from them. Ms Devereux, my geography and history teacher was my favourite.  When I left school, I felt sad because I was going to miss my friends, but also meeting the new kids who would come to school the next year. I still miss having a routine and my friends a lot. I have also had to stop sports which was terrible because I like to play tennis and football.

Today, my Mito does not bring me down as much. I’m very determined to not let it get the better of me. I have had to accept that I am slower than others. I just had to get over it and accept this disease is part of who I am. I want to be treated just like everyone else. Everybody is human, so Mito doesn’t need to define me.

I like listening to music when I get out of the bed because it makes me feel like nothing can stop me. Another thing that really helps me is fresh air, I try to get out for at least 20 minutes every day. I have now adapted to bad balance and sitting upright, this has made me feel a lot more independent. In summer, I like to swim even though I am not a great swimmer. I also like paddle-boarding. I have to sit down on the paddle-board because I tend to fall. But my dad falls a lot too! 
I know sometimes I get down and those days I spend watching television and playing video games. I like to watch The Office; I started watching it while I was in the hospital and it really cheers me up. When I am feeling well, I like socialising and hanging out with my family. In recent years I have missed out on staying up late with family and friends because when I get too tired my eyes start to droop and I can’t see very well. I hope this next surgery on my eyes will help this and make it better.  

I have always tried to remain positive and even in these frustrating and confusing times, there have been many things and occasions that have really helped me on my journey. After hearing about my illness, many old friends that I had not seen in a while came to visit me from England. To see such familiar friendly faces at this time was amazing. I started collecting more collectibles, Paris is really good place to shop. I started my Instagram account, @frederik_le_critik. It helped me to discover new food and restaurants, Paris is really great for that. I have now become a real ‘foodie’. I like also that I am now better friends with my brother’s friends because they are more mature and easier to talk to. I am feeling more confident and understanding of others. 

My mum has always been there for me. She is always concerned for me and just wants me to be happy. Last summer, we planted a garden and used the vegetables and herbs from the garden to cook. My mum and I cooked together all summer and I liked being her sous-chef.  I have just finished planting my garden for this summer.  As always, she is doing as much as she can to make me happy. She really has been my anchor. My dad, brother and sister really help me as well. They always assist me when I need and they say that if I ever need anything, they are there for me. Outside of my family, my close friends have also really helped me through tough times. They always come to visit me at the house and in the hospital. They make me really nice videos with thoughtful messages and that really helps me get through the harder days.