My name is Ashlynn I am 13 years old. Please donate to accelerate gene therapy research for a cure for my rare mutation disorder (Gene replacement) so I can have a normal life like most us.
I see myself as one of the lucky ones, three tumours in my thirteen years. That may sound like a lot to you, however there are many others who struggle from the same condition as me, with worse cases of NF2.
From about the age of 10 I started to feel unwell, with many headaches nausea and vertigo. I broke my arm the day before my 11th birthday. Best birthday present ever (yay)...
I knew I was dying and was frightened to go to sleep in case I didn’t wake up. It was a priority to tell my family and friends every day, ‘I love you’. At school I worked hard to keep up with my school work, and continued to do as much as I could “normally” with my friends, playing basketball, cricket etc.
I remember frequently passing out or blacking out in the middle of the oval, and one of my friends would run to get my teacher. Often vomiting on the bus when going to school and my sister having to call Mum to come collect us to change clothes, many times staying home too unwell. Every day I was up at the hospital, teachers saying it was all in my head, that it was just an excuse to get out of school.
Two months went past of anxiety attacks, fainting, hearing voices talking to me, marching in my ears and seizures; It was frightening! The doctors brushed it off and said it was just my broken arm, until I saw finally saw a doctor who listened to Mum and saved my life.
He had me doing exercises, such as walking on my heels, which I couldn’t do, so he diagnosed me with drop foot. He felt my spine, which indicated scoliosis. Looking at my clawed hand, and by then the left side of my face was showing signs of Palsy.
Mum and I had gone home, and while I was getting ready for bed, mum’s phone rang.
The Doctor told Mum that I needed to be seen at Westmead children's hospital as soon as possible, which was the next morning at eight o’clock. We left with nothing packed, thinking it was just going to be a quick appointment, but the nurse told me that I was going to have to sleep over for ‘one night’.
I was a mess, very scared and I stayed up all night even though I was tired, I made it up the next day during MRI and fell into a deep sleep. They did some investigating after my scans had been processed, and told mum and I that I had a 6cm x 5cm menginoma inside the right ventricular chamber of my brain. I was scheduled for Major brain surgery on the 18th of October 2016
Due to the complications of my surgery I felt I was a miracle when I woke from the surgery. Afterwards did feel harder, sitting in the hospital, going through rehabilitation, which felt like years. Face-timing my sister and brother was the best feeling in the world, as well as the worst, as I’d hear my dog and cat crying in the background at my bedroom door when they heard my voice.
2019 and I’m becoming stronger. Although I have challenges of sight loss, deafness, acquired brain injuries and physical restraints before me; Regular MRI’s to monitor and always wondering what they will discover each time. It isn’t a disability, it doesn’t disable me from doing most things, but I have to modify and work harder to succeed . I want to be ‘normal’, even though nobody is normal.
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