VHL has been a long journey so far for all of us. My mum is the first in our family to have it then Jack, me and Arran got tested and it came back we have it. Life with VHL is really hard sometimes the waiting on appointments to the waiting on results it’s scary never knowing what’s next. In October 2021 I had an emergency head operation because of a tumour. I felt fine and my dad’s girlfriend said my eyes were rolling to the back of my head but I felt fine! I said I wasn’t going to hospital because it was nothing and my mum was in waiting to get her 2 head surgery’s. She heard my name getting mentioned and tried to jump out of bed to see what was going on and I got transferred to Glasgow by ambulance to then get my head operated on. It was one of the most scariest things in my life learning to walk properly again and learn to live with the scar and pain. VHL has affected me in ways most people don’t understand/see. My dream job was veterinary nurse or just working with animals in general and because of one operation I can’t work or do a lot of things I wish I could! Even the silly little things like going on a rollercoaster. When I was pregnant the full way through my pregnancy I was hoping and praying Oakley wouldn’t have it and the day the letter came my heart sank I sat there reading it and burst into tears Oakley HAS inherited it she doesn’t need all the hospital appointments but she’s going to have so much family and friends to help her through it shes not alone. My last few appointment for my eyes came back fine and the doc said next appointment in a years time I’ve not had news like that in a long long time it felt amazing him saying that, I have 2 tumours currently one in my spine and one in my brain just under where my last one was, it’s scary waking each day knowing that their there and there’s not much that can be done until there big enough to be operated on. Life is full of things that aren’t fair, but what’s the point on focusing on the things that’s not fair than the things that are fair. I see life as a rollercoaster sometimes it’s good and sometimes it’s not it’s about taking one day at a time and taking the hard times as a time to think and work out a plan will help you feel more at ease. #vhlawareness
