Huntington's disease sufferer wants to die, but referendum result won't give her that option
Rachel Rypma has one word for the euthanasia referendum outcome: “awesome”.
The 45-year-old Christchurch woman, who has Huntington’s disease, wants the right to end her life, but the legislation won’t apply to her as it’s unknown how long she will live.
The eligibility criteria means the bill only applies to those with a terminal illness who are likely to die within six months.
The neurodegenerative genetic disorder has wreaked havoc on Rypma’s body and brain since she moved into a care home nine years ago.
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She can no longer walk or feed herself. Communication is increasingly difficult as she struggles to form words and sentences.
Carers helped Rypma cast her ballot in the referendum.
Rypma’s mother, Denise Forbes, said her daughter wrote a living will 13 years ago, and made it clear she did not want to be alive when the disease took hold.
“I am delighted that there is now a choice for those with a terminal illness who have less than six months to live.
“Of course, I’m disappointed that people like Rachel will not get to make that choice, but maybe in time the parameters might change.”
After a diagnosis, when Rypma was 23 years old, she and her then partner, Gabe, made the painful decision to terminate a pregnancy.
Gabe Rypma previously 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.’”
The couple spent time living in Sydney, Seattle and Singapore and 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.
Forbes said she had reached a low point and suffered from depression.
After moving into the care home in 2013, she tried to run away and tried to take her life twice.
Forbes said it could take 20 years for someone with Huntington’s to die but there was huge variation in how it affected each sufferer.
People with the disease often died as a result of choking on their food, or developing 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.”