March4NETs Ryan

I’m raising money towards a brighter future for people living with neuroendocrine cancer and Von Hippel Lindau Syndrome

I have been diagnosed with rare genetic disease called VHL. I was genetically tested at the age of 12 months. Throughout my early childhood, I have had routine eye checks, urine collections and CT scans. Unfortunately, at the age of 11, an MRI revealed I had multiple tumours along my spine and two years later at the age of 13 I had begun to experience symptoms. My right leg was swinging out as I walked, necessitating the use of a crutch. A date was set for surgery and while I waited, I was in severe pain, sleeping on a pure foam mattress with my mother in front of the tv, getting a few hours of sleep at a time and unable to go to school. 

I ended up being hospitalised in Tamworth hospital, to which I was flown to Brisbane just prior to the surgery date that was scheduled. During surgery, I started to bleed out. Luckily, I made it through with the help of a second neurosurgeon, but when I woke up, I was paralysed on my entire right side. Through rehab, I was able to regain function.

A year later my symptoms returned in my right leg and more tumours were found along my spine so I once again underwent surgery to remove these. More rehab was required to regain function in my leg and I worked my way back to playing sports, which I loved.

After a “good seven-year break”, where I had both eyes lasered to remove tumours, my left hand went numb and I underwent my third spinal surgery. This affected my right side again and meant I had to wear a dictus band.

My application for support from the NDIS was refused a total of three times before eventually being accepted, and in that time I was unable to get the physio I needed, never regaining my ability to run.

With limited funding, I was finally able to get access to a physio and an ankle foot orthosis (AFO).

The following year, after losing function my left arm, I had a fourth surgery to remove tumours along my spine which took out pretty much both my legs. The removal of 3 tumours during a fifth spinal surgery 7 months later cause significant bleeding during the operation and the impact of this surgery has been significant and long lasting. Function in both of my legs was affected and I now wear an AFO on both legs. My fine motor skills, dexterity and balance were affected, and I am  in constant pain, still using a crutch.  I currently have cysts and tumours in my pancreas and cysts in my kidneys which are being monitored. I have received a higher NDIS package to support his day to day living and home maintenance.

I attend the physio three times a week which has improved my strength, but I am still unable to feel my hands fully. I undertake  yearly MRI, kidney MRI, blood test and eye test. I travel interstate for my specialists, except for my ophthalmologist, and for my surgeries where I recover before being able to drive back home. Although my treatment has been through the public system, I have felt the financial impact of being out of work on numerous occasions, along with travelling to hospital. Unfortunately I had to leave my electrical apprenticeship and I still struggle with insomnia and the mental health burden of living with VHL.

Throughout my five major surgeries and recovery from these surgeries I have spent twelve weeks in hospital as a child and missed up to nine weeks at a time off work, using sick leave, sickness allowance and for the previous three years, my disability pension. I have previously lost my employment due to this time off and has just recently lost a second job which I felt was a direct result of the challenges VHL has left me with. I worry for the future and how I will financially support myself with the disability the surgeries have caused.

I want to work and contribute to society, hating the feeling of being a burden on the system or taking more than I need. I hope that I can continue to be there for godchildren and my nephew by accessing a treatment that can slow or prevent the growth of my tumours, preventing the need for more surgeries which have so far, had such a significant impact on my life.

I am currently advocating for Belzutifan to be included under the PBS, with the assistance of NeuroEndocrine Australia and MSD.