Help Gene and Lily managing ALS (MND)
Donation protected
In Feb 2012, my sister (Lily) and my brother in-law (Gene) moved to Australia, which was a delight for us, as they are now closer to our family.
We will always remember Gene as a fun, loving and vibrant man who has amazing life experiences and life lessons to tell to my two young boys (his adoring nephews). We also admired his dedication and passion of pursuing greater achievements, as he went back to school to finish his postgraduate and started lecturing at Charles Darwin University in Darwin.
However, in 2016, he noticed something wrong with his right foot. He was having difficult time to put a flip flop on. In another occasion, he was riding his motorcycle to a dentist appointment on and unable to make a simple right-hand turn and fell. He was shock but able to gain control right away and did not think of any medical concern.
In Jan 2017 whilst living in Canberra, he started limping and had to be supported by a cane. By mid-2017 the limping was getting worse where he must use crutches. Despite all the limitation, he continued his passion of teaching, as a lecturer at University of Canberra.
As his physical conditions getting worse, my sister Lily and Gene found Prof. Dominic Rowe from Macquarie Neurologist in Sydney and got to see him in Sept 2017 where he was formally diagnosed with ALS (MND).
MND has been described as “the cruelest disease imaginable”. The average life expectancy is 2.5 years with most people only living for 1-5 years after diagnosis. It is a progressive, terminal neurological disease and there is no known cure and no effective treatment. Gene will progressively lose the use of his muscles and ability to move, speak, swallow, and breathe.
Only 3 months after diagnosis Gene must rely on a walker at home or wheelchair outside to get around and finds most daily activities that we take for granted time-consuming, difficult, frustrating, or impossible.
Gene tried many and costly alternative treatments with the hope that they may slow the progression, however his physical conditions were not improving.
Gene stopped lecturing in 2019 when getting to class become hazardous as the University is not disable friendly. This leave his wife Lily as the main breadwinner and full time carer.
Now 2020, Gene is wheelchair bound, unable to move his body, writing, typing, dressing, showering, or eating by himself.
It is heartbreaking to see how ALS (MND) disease destroyed the life of such a loving vibrant person. With no known cure, all we are asking is for help to ease the burden and provide Gene the level of care that he requires.
Any money raised through this campaign will go into a special account to help Gene and Lily pay for ALS/MND related expenses. These expenses include but not limited to:
- Medications & supplements: Gene is taking many medications for the pain, vitamins and supplements which cost about $250/month.
- Top up for government funded care. Funding from the government only able to support about 15 hrs./weeks, while Gene needs 24/7 care.
- Wheelchair accessible transport cost
- Bipap respiratory machine which he will need asap $8K
- Equipment/technology that will improve Gene’s quality of life. As he is not eligible for NDIS due to his age, many of these have to be purchased.
- Eye tracker or Communication device
Gene is a much loved and respected husband, brother, uncle, cousin, friend, lecturer, and colleague. I am sure that like me, many of you feel helpless and are seeking a way to support Gene and Lily in some way. Supporting them financially is one practical way we can help. Please consider making a donation if you are in a position to do so and/or share this link.
Thank You from the bottom of our hearts
We will always remember Gene as a fun, loving and vibrant man who has amazing life experiences and life lessons to tell to my two young boys (his adoring nephews). We also admired his dedication and passion of pursuing greater achievements, as he went back to school to finish his postgraduate and started lecturing at Charles Darwin University in Darwin.
However, in 2016, he noticed something wrong with his right foot. He was having difficult time to put a flip flop on. In another occasion, he was riding his motorcycle to a dentist appointment on and unable to make a simple right-hand turn and fell. He was shock but able to gain control right away and did not think of any medical concern.
In Jan 2017 whilst living in Canberra, he started limping and had to be supported by a cane. By mid-2017 the limping was getting worse where he must use crutches. Despite all the limitation, he continued his passion of teaching, as a lecturer at University of Canberra.
As his physical conditions getting worse, my sister Lily and Gene found Prof. Dominic Rowe from Macquarie Neurologist in Sydney and got to see him in Sept 2017 where he was formally diagnosed with ALS (MND).
MND has been described as “the cruelest disease imaginable”. The average life expectancy is 2.5 years with most people only living for 1-5 years after diagnosis. It is a progressive, terminal neurological disease and there is no known cure and no effective treatment. Gene will progressively lose the use of his muscles and ability to move, speak, swallow, and breathe.
Only 3 months after diagnosis Gene must rely on a walker at home or wheelchair outside to get around and finds most daily activities that we take for granted time-consuming, difficult, frustrating, or impossible.
Gene tried many and costly alternative treatments with the hope that they may slow the progression, however his physical conditions were not improving.
Gene stopped lecturing in 2019 when getting to class become hazardous as the University is not disable friendly. This leave his wife Lily as the main breadwinner and full time carer.
Now 2020, Gene is wheelchair bound, unable to move his body, writing, typing, dressing, showering, or eating by himself.
It is heartbreaking to see how ALS (MND) disease destroyed the life of such a loving vibrant person. With no known cure, all we are asking is for help to ease the burden and provide Gene the level of care that he requires.
Any money raised through this campaign will go into a special account to help Gene and Lily pay for ALS/MND related expenses. These expenses include but not limited to:
- Medications & supplements: Gene is taking many medications for the pain, vitamins and supplements which cost about $250/month.
- Top up for government funded care. Funding from the government only able to support about 15 hrs./weeks, while Gene needs 24/7 care.
- Wheelchair accessible transport cost
- Bipap respiratory machine which he will need asap $8K
- Equipment/technology that will improve Gene’s quality of life. As he is not eligible for NDIS due to his age, many of these have to be purchased.
- Eye tracker or Communication device
Gene is a much loved and respected husband, brother, uncle, cousin, friend, lecturer, and colleague. I am sure that like me, many of you feel helpless and are seeking a way to support Gene and Lily in some way. Supporting them financially is one practical way we can help. Please consider making a donation if you are in a position to do so and/or share this link.
Thank You from the bottom of our hearts
Organizer and beneficiary
Lina Ang
Organizer
Acacia Gardens, NSW
Lily Ang
Beneficiary