Support Sharon Kirkwood’s MND Journey
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Late 2017, my younger sister, Sharon Kirkwood (Freeman) was 34 and living in Canberra with her husband Adam and her two young boys, Harrison (4) and Hayden (2). She was busy juggling her role as a Mum and her career as a Head Teacher PDHPE at a high school in Queanbeyan. After finishing a season of indoor netball she began to notice a slight limp and some mobility issues with her right leg. She underwent a series of medical tests before being referred to a specialist in Sydney. It was there on the 27th April, 2018 that Sharon and Adam received the devastating news that she had Motor Neurone Disease (MND).
MND has been described by leading neurologist, Dominic Rowe, as “the cruellest disease imaginable”. The average life expectancy is 2.5 years with the majority of 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. Sharon will progressively lose the use of her muscles and ability to move, speak, swallow and breathe.
Only 18 months after her first symptoms and 12 months after diagnosis, Sharon is already struggling in ways the rest of us can’t even imagine. As all of the muscles in her body become affected she now has to rely on a walker or scooter to get around and finds most daily activities that we take for granted time-consuming, difficult, frustrating or impossible. This includes moving her body, eating, writing, dressing, showering, speaking, meal prep and helping her boys with basic tasks and activities.
Yet in the face of these challenges, Sharon continues to display tremendous courage and determination and is an inspiration to everyone that has followed her journey. She has focused on keeping life as normal as possible for her two boys, enjoying life whilst being proactive in seeking information and support. Sharon is also committed to raising awareness of MND and funds for MND organisations. Last year for the Canberra Walk to D’feet MND, “Shaz’s Squad” raised over $25,000 for the NSW MND Association and was the largest team they’d had for any of their walks. This year, “Shaz’s Squad” has been entered into the Forbes, Hunter and Canberra Walk to D’feet MND. Sharon is sharing her experiences on a Facebook page, Sharon’s MND Journey.
Sharon loves her job and through the support of her amazing colleagues, she continues working which is a much-needed boost socially, mentally and financially. However, she has already dropped back to 3 days a week and with her speech, typing and general mobility continuing to decline, it won’t be long before she will be unable to continue working, having a significant impact on their financial situation.
Any money raised through this campaign will go into a special account to help Sharon and Adam pay for MND related expenses. These expenses include:
- Medications: Sharon has started taking Ibudilast , a phase 3 trial drug sourced from Japan ($100-$200pm) and wants to start trying Triumeq which is going to a phase 3 trial here in Australia ($1000pm)
- Wheelchair accessible vehicle $20-$50K
- Bipap respiratory machine $8K
- Equipment/technology that will improve Sharon’s quality of life. Although the NDIS will fund many things, people with MND are being denied access to items as they deem it’s not value for money due to the limited life expectancy.
This support will allow them to direct any of their own savings into their mortgage, making the future for the boys a bit more secure, as well as allowing them to enjoy some holidays and experiences together as a family while they still can.
Sharon is a much loved and respected wife, mother, daughter, sister, niece, cousin, aunt, friend, teacher and colleague. I am sure that like me, many of you feel helpless and are seeking a way to support Sharon and her family 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.
Any support you can provide will be hugely appreciated by this young family who have had their lives completely turned upside down.
MND has been described by leading neurologist, Dominic Rowe, as “the cruellest disease imaginable”. The average life expectancy is 2.5 years with the majority of 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. Sharon will progressively lose the use of her muscles and ability to move, speak, swallow and breathe.
Only 18 months after her first symptoms and 12 months after diagnosis, Sharon is already struggling in ways the rest of us can’t even imagine. As all of the muscles in her body become affected she now has to rely on a walker or scooter to get around and finds most daily activities that we take for granted time-consuming, difficult, frustrating or impossible. This includes moving her body, eating, writing, dressing, showering, speaking, meal prep and helping her boys with basic tasks and activities.
Yet in the face of these challenges, Sharon continues to display tremendous courage and determination and is an inspiration to everyone that has followed her journey. She has focused on keeping life as normal as possible for her two boys, enjoying life whilst being proactive in seeking information and support. Sharon is also committed to raising awareness of MND and funds for MND organisations. Last year for the Canberra Walk to D’feet MND, “Shaz’s Squad” raised over $25,000 for the NSW MND Association and was the largest team they’d had for any of their walks. This year, “Shaz’s Squad” has been entered into the Forbes, Hunter and Canberra Walk to D’feet MND. Sharon is sharing her experiences on a Facebook page, Sharon’s MND Journey.
Sharon loves her job and through the support of her amazing colleagues, she continues working which is a much-needed boost socially, mentally and financially. However, she has already dropped back to 3 days a week and with her speech, typing and general mobility continuing to decline, it won’t be long before she will be unable to continue working, having a significant impact on their financial situation.
Any money raised through this campaign will go into a special account to help Sharon and Adam pay for MND related expenses. These expenses include:
- Medications: Sharon has started taking Ibudilast , a phase 3 trial drug sourced from Japan ($100-$200pm) and wants to start trying Triumeq which is going to a phase 3 trial here in Australia ($1000pm)
- Wheelchair accessible vehicle $20-$50K
- Bipap respiratory machine $8K
- Equipment/technology that will improve Sharon’s quality of life. Although the NDIS will fund many things, people with MND are being denied access to items as they deem it’s not value for money due to the limited life expectancy.
This support will allow them to direct any of their own savings into their mortgage, making the future for the boys a bit more secure, as well as allowing them to enjoy some holidays and experiences together as a family while they still can.
Sharon is a much loved and respected wife, mother, daughter, sister, niece, cousin, aunt, friend, teacher and colleague. I am sure that like me, many of you feel helpless and are seeking a way to support Sharon and her family 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.
Any support you can provide will be hugely appreciated by this young family who have had their lives completely turned upside down.
Organiser
Michelle Freeman
Organiser