Huntington's sufferer Rachel Rypma: 'Let me die' video

DEAN KOZANIC/Stuff.co.nz

Rachel Rypma​ celebrated her 40th birthday last August, but is adamant she does not want a 41st.

At 24, the Christchurch woman discovered she had the neurodegenerative genetic disorder Huntington's Disease.

At the time, she lived in Sydney with her partner, Gabe Rypma, pregnant and full of hope.

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Today, she lives alone in a care home in Christchurch and wants to die. 

READ MORE: The euthanasia debate

She wants people to know what it is like for her, and hear her plea. 

Huntington's sufferer, Rachel Rypma, pictured before her diagnosis, wants the right to end her own life.
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Huntington's sufferer, Rachel Rypma, pictured before her diagnosis, wants the right to end her own life.

As Rypma​ makes her way to a small living room she clutches her walking frame and struggles to keep her body on task.

Her limbs, torso and head are in constant motion, wildly flailing in different directions. 

The disease has taken control of Rypma's​ body and speech, but her mind has so far stayed intact. 

Huntington's sufferer, Rachel Rypma, wants the right to end her own life. Rachel with her mother, Denise Forbes.
DEAN KOZANIC/FAIRFAX NZ

Huntington's sufferer, Rachel Rypma, wants the right to end her own life. Rachel with her mother, Denise Forbes.

Eventually, she will probably slide into dementia. 

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With her mother, Denise Forbes, by her side, Rypma​ concentrates to string the words together. 

"I'm not happy, and I want to die." 

Huntington's Disease sufferer Rachel Rypma, 40, wants to be able to choose when she dies.
DEAN KOZANIC/FAIRFAX NZ

Huntington's Disease sufferer Rachel Rypma, 40, wants to be able to choose when she dies.

It's a phrase she repeats often.

The scars on her forehead are testament to her frequent falls as the involuntary movements overpower her balance.

Simple pleasures such as a daily walk to the petrol station for coffee and cigarettes are moving out of reach.

She now goes in a wheelchair and struggles to hold a cigarette between her fingers. 

Most of her food has to be pureed and fed to her by carers, but eating is still hazardous. She often chokes or vomits at meal times. 

Tall and willowy, Rypma​ recently opted to shave her light brown hair. A large gold and orange medallion hangs around her neck. Throughout the interview she pauses to smile for the camera.

It is a reminder of her former vitality.

After the diagnosis, Rypma​ and her then partner, Gabe,​ made the painful decision to terminate the pregnancy.

Gabe Rypma said his former wife was an advocate for euthanasia from the time she was diagnosed. 

"She said, 'let's go and have an amazing life', but when the dignity is gone and I can't walk, then I want the choice to end my life."

They lived life to the full, spending time living in Sydney, Seattle and Singapore. They travelled the world until the disease took a toll on her​ and the couple's relationship.

In 2007 Rypma​ returned to Christchurch on her own. 

She had reached a low point and suffered from depression, Forbes said. 

After moving in to the care home three years ago she tried to run away and tried to take her life twice, Forbes said.

She supported her daughter's position on euthanasia. 

"I believe someone in Rachel's situation should have the right to choose."

Forbes knew of another woman with Huntington's Disease who starved herself to death, an agonising process that took nine weeks.

Rypma had a "living will" that specified she would not take medication if she was to fall ill. Forbes said it was likely she would succumb to an infection this winter. 

The disease was progressing rapidly. She had lost 14 kilograms over the past six months because of her constant movement. 

Huntington's Disease nurse Jeanette Wiggins said 80 per cent of patients died when they accidentally inhaled food or drink and it lead to pneumonia. 

In a submission to the Health Select Committee, Gabe Rypma​ said he was a proponent of the right to die because Rachel Rypma​ had inspired him to see the world through her eyes.

"There is a better way, and together we should be able to show the dignity and respect to the individual. We owe that dignity to Rachel who has taught and given us so much about living with death from a young age."

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 - Stuff

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