My Story

Hello, my name is Anna, and I just turned 14 years old. The day after my birthday, I had an Intracranial Pressure Monitor inserted into my brain. My medical team has diagnosed me with Papilledema and Idiopathic Intracranial Hypertension (IIH), but no one knows why it’s happening.

I have multiple specialist teams caring for me in hospital, but they still don’t understand why my brain is producing too much cerebrospinal fluid. Because of this, the pressure inside my skull can get dangerously high, which puts my eyes and brain at serious risk. My vision often goes blurry, and my headaches can feel like 13 out of 10. The medications haven’t worked. I get dizzy, nauseous, and sometimes faint, even when I am lying in bed and I’m not doing much. I’ve had three lumbar punctures in the last eight weeks, which has been really scary.

I spend a lot of time in hospital. The doctors closely monitor the pressure in my brain, and when it gets too high, I need an urgent lumbar puncture to relieve it. If it happens again, they’ll have to insert a permanent shunt to drain the fluid from my brain to my tummy. It's not a perfect solution, and it will be a big challenge but it could save my vision, and possibly my life.

This journey has been incredibly hard. On top of my medical condition, I also live with Level 3 Autism (which means I need very substantial support) and PTSD with dissociative features. It hasn’t always been this way. When I was 7 years old, I was diagnosed with Level 1 Autism. But then I was severely bullied by another student at school for a whole term and I didn’t know how to tell anyone. That experience changed my life completely.Back then, my brain and body shut down. Ever since, whenever I feel scared, overwhelmed, or confused (which happens a lot) I freeze. It becomes really hard for me to understand what’s happening around me, or even inside me. Everything feels like too much. I miss my friends. I miss playing outside.

I also struggle with eating and drinking. Last year, I developed disordered eating (ARFID), and in August, I had to have a PEG tube put into my stomach to help me stay nourished. I’ve been in hospital 16 times in the last year alone and it’s been exhausting.One bright spot in all of this has been the therapy dogs that visit me in hospital. They make me happy. They’ve helped me a lot over the years especially when I couldn’t find the words to explain what I was feeling. They just seem to know. Sometimes, they lie across my legs or near my head, right where I need them to be. They bring a little bit of joy and calm into my life, every single time I see them.

Now, I’m hoping to raise funds for an Autism Assistance Dog. A dog like this could help me feel safer, calmer, and less afraid of the world. They could help stop me from dissociating, stay with me if I faint, or lie close when I feel overwhelmed. I could rub their ears to help me calm down, or cuddle them when I’m scared. With their support, maybe one day I’ll feel brave enough to go back to school… and make friends again.

I miss riding my bike. I miss having people to talk to. I’ve lost so much over the past few years and it hurts. I didn’t do anything wrong. I don’t understand why all of this has happened to me.

But I believe an Assistance Dog could help me build a new, better life. A dog would be more than a companion, they’d be a friend, a support, and someone by my side when I need them most. With their help, maybe I can be brave enough to go to the shops… or even back to school someday. I dream of working with my hands.

Can you help me?

Thank you for reading my story. It means a lot to me. My mum helped me write this, with my words.

♥ Anna