Since being diagnosed with Von Hippel Lindau and gaining a spinal cord injury on 1st November 2021 from a 6cm hemangioblastoma tumour in my spinal cord C1-C4 related to the disease, I woke up from surgery unable to move any part of my body, just my neck. I couldn’t raise my arms nor my legs. I couldn’t react for a drink, I couldn’t scratch my head, rub my eyes, those tiny details we don’t even think about doing I couldn’t do and it made me have an anxiety attack because I’m telling my brain to rub my eye and my arm isn’t moving. I freaked out and was so confused about what the hell was going on. I honestly have never been so scared in my life.

Over the couple weeks of being in NICU I started being able to raise my left arm but had no control, my right arm I still couldn’t move or my legs. I won’t sugar coat it, I was petrified and in a lot of pain. The pain got worse when they took the drain out from the back of my head. I had to go for a few CT scans as the pain was extremely intense.

After being in hospital for 3 months and being transferred to London Spinal Cord Injury Centre in Stanmore I lived there for 3 months for rehabilitation. Where they got me up and moving! My right arm still wasn’t working, my left arm I could move, I learnt to feed myself again, hold a cup to drink without spilling it all over me however I still had no sensation or whereabouts of my arm so I really had to focus watching what I was doing with it. I could officially move my legs (yay!) but my right foot had a foot drop and was turning inwards because of the tightness of my muscles in the back of the leg, it was pulling my ankle inwards. I physically couldn’t look at my ankle as it made me feel sick, I hated it, hated how my ankle turns in, hated how my foot looked. But this didn’t stop me from getting up and trying to walk.

I tried walking with no support just in the parallel bars - that didn’t work

I tried walking with an ankle support in the parallel bars - that didn’t work

I tried walking with an ankle support and FES machine (electrical stimulation) on my leg in the parallel bars - that didn’t work

I tried walking with an ankle support in the hallway with assistance - that didn’t work

I wasn’t giving up so the physios brought in orthotics to review my right leg and cast me an AFO boot so I could walk. I went home on my discharge date with this AFO boot and community physio sessions weekly. Eventually, I started walking. I was using a walker to assist my walking.

I went back to rehab for 2 weeks where they casted me for a new AFO boot however this boot was like a high heel as I would stall at 6 foot tall walking was scary as I felt further from the ground so in the back of my mind, if I fell, I was at high risk of doing damage to my body. However I kept going, I learnt to walk unaided - I put my walker aside.

Taking a few steps wasn’t good enough with my walking. I was referred to a foot specialist to review my right foot. There were plans for me to have leg surgery (Achilles tendon surgery) would help correct my foot and help me with my walk journey.

Furthermore to this I was casted my third AFO boot with a complete 90° angle I no heel to the boot. I could purchase a pair of shoes and walk in a pair that fitted my AFO boot. I opted for a brand called friendly shoes (wider fit Voyage black tornado) at £87.60 a pair, I had to purchase 2 pairs at different sizes (size 6 left, size 10 right). Walking was great, I felt stronger the more I put weight through my right leg and had to learn to trust my right leg again,I had to learn to love my leg.

Going back to rehab for the 2nd time at ringfence there was a whole list I wanted to do. I wanted to walk without the AFO boot, stairs, outside and so much more.

While I was there they weaned me off the AFO boot and learned how to walk in a pair of shoes with an ankle support called Boxia drop foot AFO brace. Using a crutch and having to think about lifting my right leg up as when walking with the AFO boot I was swinging my leg around instead of lifting it.

So now I am taking very small steps thinking to lift my leg up while pushing my bum in and not forget to breathe. It’s a lot just to walk!

To celebrate my 4 year anniversary I am creating a sponsor walk with me! I am going to be taking on 4 laps for 4 years round a piece of a park (I know 4 laps sounds like nothing, but to me it’s a big achievement and one I am demanding to accomplish)

Growing from that 26 year old, laying in a hospital bed unable to move to a 30 year old learning to walk achieving her goals and still living after a spinal cord injury.

Sponsor money will be going towards a piece of equipment for my arm rehab. It is a mobile arm support called Orthopus supporter.