It all starts when my nan lost her life when my mother was at the age of 10 due to VHL, I never got the chance to meet her. I was diagnosed with VHL at the age of 4 and my life has been based all around the condition. At the age of 6 my mother had to have emergency brain surgery for a haemangioblastoma in her cerebellum (lower part of brain), at the time my sister was only 6 months old and we didn’t have the family support that an average family would’ve had. which therefore led to me picking up a lot that my mother couldn’t. That was just the start of the surgeries my mother has further gone 3 kidney surgeries to remove cysts and another brain surgery throughout the years. I also sadly lost my uncle John due to this condition. For as long as I can remember I have always had to put my life on hold for this horrible condition. I got told December 2023 that I also had a tumour in my cerebellum that was also like my mothers first tumour, a haemangioblastoma on my cerebellum and it took me a long time to process and accept it evidently too long as it brought up past trauma, I got told in may 2024 I would need to have brain surgery to remove this tumour as it was starting to block important parts of my brain, although I wasn’t displaying symptoms the growth in such a short space of time was concerning. I finally accepted that I needed to have this surgery so me and my neurosurgeon agreed June 27th 2024 would be my surgery date exactly a week after my 20th birthday. I booked a last minute holiday to Malaga on the 8th June and I planned to stay out there for 7 days. The flight triggered my tumour and I nearly lost my life I ended up spending 6 months in Spain, needed multiple forms of life support (tracheostomy, feeding tubes and oxygen). I was put in a medically induced coma and unfortunately was not awake on my 20th birthday. I thankfully made it home for Christmas 2024 and I have had a miraculous recovery after a lot of hard work to get back to being me but through it all it’s made me realise how much this condition has a hold of you and your family members lives without you even realising. Now I wake up with a lot of gratitude to life and a lot of motivation to beating this illness all over again when the times comes. #vhlawareness
