Bethanie Price is a “typical teenager”, studying hard at sixth form, loves getting her nails done and watching trashy television.
But she does this faced with extraordinary challenges and a rare health condition that, in the last few years, has taken away her ability to walk and even speak as she did before.
Bethanie, 17, of Mirfield, had a normal childhood until the age of seven, when she began to develop tremors in her arms.
After exhaustive tests, doctors at Leeds General Infirmary discovered white matter on her brain, and she eventually diagnosed with leukodystrophy, a degenerative, life-shortening condition. Over the following years, Bethanie’s condition deteriorated, but according to her mother Johanna, she won’t let it stop her getting in the way of life.
She passed her GCSE exams and is now in her second year of sixth form at St John Fisher Catholic Academy in Dewsbury, where she is studying health and social care and finance.
Her bravery and courage has seen her nominated for a Yorkshire Children of Courage Award. The event, in Leeds next month, raises tens of thousands of pounds for charities supporting young people and recognise the most courageous children in the region.
Mrs Price, 37, said: “Whatever life throws at her, Bethanie gets on with it. She’s so brave and just keeps smiling.”
Doctors still do not have an exact diagnosis for Bethanie’s condition. Leukodystrophy covers a multitude of rare genetic disorders that affect the central nervous system. The condition is so rare that she is monitored by a specialist in Holland.
Bethanie is now wheelchair-bound, has scoliosis and requires around the clock care. The condition has now affected her speech, but Mrs Price said the gutsy teenager “makes herself clear what she wants”.
“She’s a typical teenager,” she said. “She loves eating out, having her nails done, being on her iPad and watching trashy telly.
“She’s headstrong with a great sense of humour.”
Bethanie was nominated for the award by staff at Forget Me Not Children’s Hospice where she goes once a week and occasionally stays over. She’s a big hit with the staff, and the whole family are hugely appreciative of the hospice. The awards will take place at New Dock Hall October 16.