Help Jane Fight MND /ALS
Donación protegida
Hi,
Jane is my sister and one of the most important people in my life I have been watching her suffer from this terrible disease for well over 2 years now and it's heartbreaking.
I decided I want to help make her life more bearable and I started this campaign in the hope that you will be able to make a donation no matter how small that can change her day to day living and even extend her life.
Ian and Jane, and their two children were enjoying their lives until 2017, then Jane was diagnosed with motor neurone disease. If any of you know anything about this disease it is a devastating one with no cure. Unlike Professor Steven Hawking, not everyone manages to live so long with this awful disease.
Jane was a practising psychologist working with children and families her entire working life, while Ian works with criminal offenders struggling with mental health issues. They’ve each spent their entire careers in public health, caring for individuals and families every day.
During March 2017 Jane began the long road toward her diagnosis of motor neurone disease. It took until November 2017 to reach a final, irrevocable, answer. That year was spent doing anything and everything possible to find another explanation for her symptoms and find treatment. By December 2017 Jane was deteriorating rapidly, and her health continued to decline throughout the following year. No matter where we looked, all roads lead to motor neurone disease.
Now they find themselves in a position where they urgently need help and support.
Jane’s family is now living the MND lifestyle. This entails carers visiting three times a day, hoists to lift Jane between beds and chairs, along with a powered wheelchair to provide at least some independent mobility. These days she counts as gifts, the bits of machinery to make her life more bearable and keep her alive.
I have two wishes for this campaign. My first is for a wheelchair-adapted vehicle for my sister, as the NDIS will not fund vehicles for people with a shortened life expectancy like Jane. Second-hand vehicles suitable for her travel requirements start at around $25,000 AUD and Jane and Ian simply don’t have the funds. In the meantime they use taxis. Unfortunately travelling in a taxi causes damage to her back. The raised floor affects the trip and she gets thrown about while strapped into her powered wheelchair. This usually ends with two or more days of heightened pain – for a jaunt as menial as a half-hour shopping trip. Of course, there will inevitably come a time when Jane won’t be able to travel at all, at which point Jane and Ian will donate the car to another MND victim.
A wheelchair-adapted vehicle would make such a difference to Jane’s life. She and her husband could easily pop out to the shops, or take a trip to the garden centre (Jane loves gardening). Currently, a trip to the supermarket is a huge undertaking. Something most of us take for granted, it involves booking a wheelchair adapted taxi, hoping a suitable taxi is available, then putting up with the pain from being jostled about by an insensitive taxi driver.
My second wish is for her to be able to access the drugs that help fight this disease. Apparently, the drug company will give the drug on a compassionate basis but they charge thousands – and they simply don’t have the money.
Without treatment, she has been told she has about another year of her life left. She has so much more she wants to see happen: Cardinal Pell imprisoned (tick), more refugees making a difference in new homes in Australia, more same-sex couples married with children, her health industry colleagues making even more of a difference. But mostly she wants to watch her family walk through their lives knowing that she loves them and that she can remain alongside for as long as possible.
Anyone who knows me knows my sister Jane is one of the most important people in my life. In fact, she is the most important person for all our family. I implore you to give anything that you can. Anything at all, no matter how small, will add so much to Jane’s quality of life.
We need help urgently.
Thank you and with love,
Clare Vane-Tempest
Jane is my sister and one of the most important people in my life I have been watching her suffer from this terrible disease for well over 2 years now and it's heartbreaking.
I decided I want to help make her life more bearable and I started this campaign in the hope that you will be able to make a donation no matter how small that can change her day to day living and even extend her life.
Ian and Jane, and their two children were enjoying their lives until 2017, then Jane was diagnosed with motor neurone disease. If any of you know anything about this disease it is a devastating one with no cure. Unlike Professor Steven Hawking, not everyone manages to live so long with this awful disease.
Jane was a practising psychologist working with children and families her entire working life, while Ian works with criminal offenders struggling with mental health issues. They’ve each spent their entire careers in public health, caring for individuals and families every day.
During March 2017 Jane began the long road toward her diagnosis of motor neurone disease. It took until November 2017 to reach a final, irrevocable, answer. That year was spent doing anything and everything possible to find another explanation for her symptoms and find treatment. By December 2017 Jane was deteriorating rapidly, and her health continued to decline throughout the following year. No matter where we looked, all roads lead to motor neurone disease.
Now they find themselves in a position where they urgently need help and support.
Jane’s family is now living the MND lifestyle. This entails carers visiting three times a day, hoists to lift Jane between beds and chairs, along with a powered wheelchair to provide at least some independent mobility. These days she counts as gifts, the bits of machinery to make her life more bearable and keep her alive.
I have two wishes for this campaign. My first is for a wheelchair-adapted vehicle for my sister, as the NDIS will not fund vehicles for people with a shortened life expectancy like Jane. Second-hand vehicles suitable for her travel requirements start at around $25,000 AUD and Jane and Ian simply don’t have the funds. In the meantime they use taxis. Unfortunately travelling in a taxi causes damage to her back. The raised floor affects the trip and she gets thrown about while strapped into her powered wheelchair. This usually ends with two or more days of heightened pain – for a jaunt as menial as a half-hour shopping trip. Of course, there will inevitably come a time when Jane won’t be able to travel at all, at which point Jane and Ian will donate the car to another MND victim.
A wheelchair-adapted vehicle would make such a difference to Jane’s life. She and her husband could easily pop out to the shops, or take a trip to the garden centre (Jane loves gardening). Currently, a trip to the supermarket is a huge undertaking. Something most of us take for granted, it involves booking a wheelchair adapted taxi, hoping a suitable taxi is available, then putting up with the pain from being jostled about by an insensitive taxi driver.
My second wish is for her to be able to access the drugs that help fight this disease. Apparently, the drug company will give the drug on a compassionate basis but they charge thousands – and they simply don’t have the money.
Without treatment, she has been told she has about another year of her life left. She has so much more she wants to see happen: Cardinal Pell imprisoned (tick), more refugees making a difference in new homes in Australia, more same-sex couples married with children, her health industry colleagues making even more of a difference. But mostly she wants to watch her family walk through their lives knowing that she loves them and that she can remain alongside for as long as possible.
Anyone who knows me knows my sister Jane is one of the most important people in my life. In fact, she is the most important person for all our family. I implore you to give anything that you can. Anything at all, no matter how small, will add so much to Jane’s quality of life.
We need help urgently.
Thank you and with love,
Clare Vane-Tempest
Organizador y beneficiario
Clare Vane-Tempest
Organizador
Ian Davey
Beneficiario