A girl who turned 18 on Saturday has described how determined she is not to miss out because of her debilitating disease.
Since being diagnosed with ME (Myalgic Encephalomyelitis) in January, Hanora Kew, from Copthorne, has chronic fatigue, migraines, aches, pains, appetite loss, nausea, ultra sensitivity and memory loss
But the strong-willed teen said she was determined to continue to socialise and eventually go to university.
ME can develop from severe shock, stress or virus. For Hanora it developed after an operation on her fallopian tubes last summer which could affect her chances of having children.
The traumatic experience came back to haunt her two months later when she became fatigued and her joints became more and more painful, to the point where she sometimes couldn’t walk.
After three months of tests she was diagnosed with ME and told there was no cure and it was unknown how long it would last.
By this time she was struggling with her AS levels at Ifield Community College and had reluctantly given up three subjects but continued with art determined to study stage design at university.
She explained how it has felt to become bound to the living room most days.
She said: “I feel like I’ve missed lots of teenage years, that’s the saddest thing.
“All my friends have just got their results and are going to uni and I got really upset because I feel like I’m missing everything.
“I get scared I’m going to lose my people skills.
“But my friends call me every day and they find things we can do like the cinema or a meal or they just come round for a chat.”
The inspirational teen is trying to think positively and said as soon as she recovers she is going to fulfil all the dreams she had before she was diagnosed.
She said: “My DT teacher said to me ‘you’ve got a talent you have to use it’. I just really want to get my diploma and go back and tell him ‘I’ve done it’.”
Hanora’s mother Gill said despite the ‘heartbreaking’ situation, a good sense of humour has been the saviour.
Hanora’s sister Olivia, 14, said she felt angry when people stared at Hanora when she was in a wheelchair.
But Hanora managed to joke about the issue and said: “On a summer day I will go out in my wheelchair with ear muffs because it’s too loud and a blanket because I feel cold. You get some weird looks.”
The only thing Hanora wanted others to understand was that her symptoms change daily, meaning one day she could be walking without help and the next she can be bed bound.
She said: “I’ve heard people say ‘she’s just doing it for the benefits’ and I say ‘if you think I’d rather be like this than be out with my mates, you’re wrong’.”