Bedridden teenager with a rare disease needs help
THE family of a Nunderi teenager, bedridden with a rare disease that melts away the ligaments in her body, is in urgent need of support from the community.
Mya Hurst suffers Ehlers-Danlos Syndrome Type 3, a rare and incurable condition that hampers the production of collagen.
The Tweed Daily News initially covered the 16-year-old's traumatic plight 12 months ago, to publicise a fundraiser to help Mya deal with the condition which emerged with adolescence.
The condition is so serious that when Mya sneezes or laughs it can dislocate her ribs. Even brushing her teeth can cause her wrists to dislocate. Cruelly, Mya is also allergic to narcotics and analgesics, meaning she must endure the pain without the aid of painkillers.
Mum Kelly Hurst said Mya's situation had taken a turn for the worse three weeks ago when she fell while transferring from her wheelchair into bed.
"It caused a mammoth amount of damage," Mrs Hurst said.
The family has resorted to sharing their heartbreaking story as they struggle to provide around-the-clock care for Mya, who returned home from hospital on Monday.
Having had to give up work to give their daughter 24-hour care, the family needs financial help to pay for in-home nursing, respite and equipment.
"I've tried my best and I've done everything. I'm having to hand-feed her, but I can't do it any more," Mrs Hurst said.
Murwillumbah Lions Club donated $5000 towards Mya's wheelchair, which arrived last month.
Mya has also received a $7000 disability package from the NSW Government's Ageing, Disability and Home Care (ADHC) but the funds will run out within six weeks.
An ADHC spokesperson said the department was working on Mya's case as quickly as possible.
"ADHC is working with other government and non-government agencies to put appropriate supports in place as quickly as possible," the spokesperson said. Mya will also be considered for funding through the Community Support Program.