- Gina, who is in her mid-40s, has been bedridden in New Zealand for years
- Extremely rare genetic disorder affects her eyes, ears, larynx and joints
- She can only communicate through the use of a touch alphabet system
- Her tragic story is the subject of a new documentary by Loadings Docs
- She is desperate to get voluntary euthanasia legalised in New Zealand
This woman has been forced to live blindfolded in her dark bedroom with headphones over her ears ever since a crippling genetic disorder took hold of her body.
Gina, who is in her mid-40s, has been bedridden in her New Zealand home for several years due to an extremely rare illness that affects her eyes, ears, larynx and joints.
Sound and light cause her body further damage and Gina is unable to talk – she can only communicate through the use of a touch alphabet system.
The condition, which she has had for a decade and doctors haven’t been able to explain, has made it impossible for her to participate in every day life.
Gina has shared her story for the first time with New Zealand documentary makers Loading Docs.
‘I live in enforced darkness and almost silence as sound and light cause further damage to my eyes and ears,’ she said.
‘My muscles have wasted away leaving me painful pressure areas from head to toe. I also have total voice loss.’
Gina says in the documentary that she loves hugs but is unable to give them because of the pain it causes in her elbows.
The cruel and debilitating condition shows no sign of improving and Gina has shared her story in a bid to get voluntary euthanasia legalised in New Zealand.
Gina tragically believes she has nothing left to live for and wants the right to choose to end her life peacefully.
‘My doctor would give me medicine that would send me to sleep and then (I would) die peacefully while I hold my sister’s hand,’ she said in the documentary.
‘I think a compassionate God would want people to have the option of a humane death.’
Documentary director Wendell Cooke said they came across Gina’s story and found she offered a compelling argument for why people should have the right to choose if they were suffering.
‘Our motivation was to make a film that opened people’s eyes to a movement in New Zealand that provides terminally ill and elderly people with information about end of life choice,’ Mr Cooke said.
‘We wanted to highlight the current gap in the law for people who may want to consider ending their lives because of illness, and the impact that this gap has on everyday people.’
If you or someone you know needs help or support you can call Lifeline on 13 11 14 or visitlifeline.org.au.
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via The Daily Mail