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, West Yorkshire, 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, which is held in Leeds next month, raises tens of thousands of pounds for charities supporting young people, while recognising 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 in Huddersfield, 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. Mrs Price said it allowed Bethanie to have normality, and also gave her and husband Ashley, 39, time to spend with their other children Aoiffe, 16, and Joseph, 12.
“We were so shocked when we found out that the hospice had nominated Bethanie,” Mrs Price said. “She was really happy, and she’ll be dressed up to the nines on the night.”
Care coordinator Jo Wood said: “We have been supporting Bea at Forget Me Not Children’s Hospice for three years now and everyone here loves her, she has a fantastic personality and the way she faces all challenges head on is a real inspiration to us all.
“It would be fantastic to see the smile on her face if she won the award, an award we all believe she well and truly deserves for her continued bravery.”
The FIFTH Yorkshire Children of Courage Awards take place at New Dock Hall in Leeds on Friday October 16.
The event was set up by the St James’s Place Foundation to raise money for local good causes while recognising the bravest youngsters in our communities.
Last year’s event raised more than £100,000 for the Foundation.
This year’s event is hosted by BBC Breakfast business journalist Steph McGovern and will include appearances from the awards many celebrity supporters, including children’s entertainers The Chuckle Brothers. Tickets are still available at www.yorkshirechildre.co.uk