As you may be aware, I was diagnosed with a rare genetic disease called Neurofibromatosis Type 2 (NF2) when i was 19 years old. As with many NF2 patients, i was the first in my family and had no serious medical issues up until then. After months of back and neck pain, doctors discovered it was being caused by a large tumour in the area of the spinal cord that connects to the brain. This risky surgery left my facing a 60% chance of becoming paralysed or worse! Fortunately, the surgery was a success and after Liver Failure and learning to walk again, I was back on my feet (even if it was very wobbly).
Since then i have experienced further major brain surgery, complete hearing loss, meningitis, radiosurgery, countless eye surgeries, lumbar punctures and manage my health with regular blood tests, MRI scans and live knowing that existing and new tumours can grow at any time. Recently, I discovered that another brain tumour is growing and I will be having another majoy surgery to remove it.
Those of you who know me, will know that I rarely let NF2 get in the way of my life and am passionate about supporting deaf and disabled individuals to push their limits and break their own perceptions of their abilities. A project is underway to create a must needed resource to patients, families and healthcare professionals to understand what life is really like with NF2. You can find out more by visiting the 'Can You Hear Us' website: http://canyouhearus.co.uk/
I could only have wished for something like this when I was diagnosed. Instead I spent months trawling through websites to find very little and what was there was medical jargon i didn't understand. I reached out to my friends and family who have supported me through every step of my life - I literally cannot thank you enough, my life is amazing and it would not be the same without your support.
So now, i am reaching out once more. This project is really important to me and I urge you to give as little or as much as you can. Our target is not huge but it will have an absolutely massive impact on the NF2 community.
I will be holding a series of fundraising events to raise money for the project - Please do consider running your own event too... every little helps!
- Cake Sales
- Fitness Bonanza
Please feel free to contact me if you want to help organise an event, run your own event or donate a prize to our raffles: [email protected]
A huge thank you in advance, your support is greatly appreciated!