An 11-year-old girl was taken to hospital by her mum after suffering a 'strange episode' on her walk home - only to have doctors tell her she had an inoperable brain tumour.
Tegan Josie, from Blackpool, struggled to see out of her left eye while walking home from Brownies and doctors initially thought she was suffering from migraines.
Tegan's mum, Jane, insisted her daughter was sent for an MRI scan immediately having lost both her sister and her brother to glioblastoma multiforme (GBM) brain tumours in their thirties.
Tragically, Tegan was diagnosed with an inoperable low-grade prolactinoma aged 11, reports LancsLive.
Tegan, now 23, said: "I suddenly realised that I couldn’t see out of my left eye.
"When we got home, Mum did some visual fields tests on me and when she realised there was a problem with my vision, she took me to the NHS walk-in centre."
"Both my aunt and uncle had the genetic syndrome neurofibromatosis type 1 (NF1), meaning they were predisposed to develop multiple tumours in the brain, and Mum was worried that I may have had the same condition.”
An MRI scan confirmed Tegan had a 3cm pituitary tumour pressing on her optic nerve, and within days she was in Manchester Children’s Hospital, where she would spend the next three months undergoing treatment.
Doctors told the family that had the tumour been any bigger, Tegan would’ve needed a craniotomy.
Tegan said: “Dodging surgery was a blessing but I still had a rough ride, which is why I had to stay in hospital for so long.
"I would get bad headaches and needed to be monitored with regular scans.
"My thyroid wasn’t responding well and I had excess fluid on my brain.
"My hospital stay came at a particularly difficult time for me academically.
"I was in year 6; my final year of primary. It meant that I missed out on a lot of the transition phase, that prepares you for secondary school.”
Tegan says she missed out on "crucial bonding periods" during her time at secondary school, and struggled to make friends.
"I was in a wheelchair temporarily when I left primary school and later, I was on crutches, which made it difficult to get around the school in between lessons," she said.
"In the years that followed, I spent several more periods in hospital, due to issues relating to my tumour.
"In spite of the disruption, I managed to get my GCSEs in all subjects apart from my maths, as I missed that exam while I was in hospital.
"I did well and achieved the best I could, given the challenging circumstances.”
Tegan was further diagnosed with chronic fatigue syndrome in 2015 and remains unable to stand for long periods of time.
Migraine attacks can throw her off small tasks, leaving her exhausted and shaken up.
Tegan has the support of her partner Karl Spedding, 35, but it is video gaming that she has turned to as a way of escaping her health problems.
She said: “I’ve always had a thing for gaming, in particular Pokémon.
"My interest in the video game series has grown in recent years, especially during lockdown, and I now have a huge collection of Pokémon memorabilia, which has helped my social media to ‘blow up’.
"Gaming also keeps my brain active and is a form of escapism.
"It allows me to connect with other people online, through our shared interests.
"It means I’m part of a community of like-minded people and helps me to feel less lonely.”
She now uses her following on Instagram, Twitter, Twitch and TikTok to share her story and help raise awareness of brain tumours.
She said: “Up to now, I’ve shied away from sharing my story with all but my closest friends and relatives.
"Recently, I decided that maybe I should be more open, especially since mine is an invisible illness and not many people would know what I’m contending with on a daily basis.
"I’ve had a fantastic response and people are so supportive. I hope that maybe I can inspire and offer hope to others.”
