Lara Huddleston

$41,865 of $70,000 goal

Raised by 401 people in 16 months
Created March 5, 2018
My name is Lara and I’m 33 years old from the Adelaide Hills. I was a registered nurse before I was diagnosed with motor neurone disease also known as ALS back in September 2017, One week after my son had his first birthday.

I have a fast progressing familial form of MND which has taken the lives of four of my family members (none lasting more than 3 years) however I am the youngest by 20 years to be diagnosed with the disease. I have a wonderful husband and my son Thomas is the best thing that’s ever happened to me.

As my disease progresses I’m finding it hard to do everyday tasks and even having a shower and dressing leaves me feeling like I have run a marathon.

Motor neurone disease is a neurological disease which affects the nerves that control muscles that enable us to move, breathe, speak and swallow. When the nerve cells (neurones) die, the muscles weaken and waste away. Leaving the person a prisoner inside their own body. There is no treatment or cure known for this disease at present and I am terminal. 

The money donated will go towards expenses for leaving valuable memories behind for my family members, medical costs and equipment and a van for the electric wheelchair. I live in a remote area where it is difficult to access disability transport. 

Thank you for reading my journey and thank you for your donations. I really appreciate your kindness, generosity and support

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Hi everyone, apologies with the delay of posting. I have not been well for a month or even more. I have lost both legs as most of you know and then shortly after this I began to lose movement in my left arm, I would have about 30-40% capacity left in my arm and it’s really affected me. Having only one good arm to do everything is definitely proving to make life a lot more difficult and adjusting to things eg trying to wash my hair with one arm is not as easy as it sounds. I’m very lucky to have had my family support during this difficult time. To make matters worse, I haven’t been able to keep food or fluids down for almost 2 weeks, this includes my medication. So I ended up in a very very bad way, coming into hospice I confided in my lovely doctor and said to her I’m not going to make it. She said we will fix you up, and thankfully everything they have done for me has worked very well. Im definitely getting to the pointy end of the disease now, I’ve lost my core muscles now, appetite has gone and I haven’t eaten properly in at least 2 months. I am still fighting very hard, but time is not on my side now. I feel that in a very big way. I’m not happy about it but I’ve finally accepted my fate. Before I was never going to give up, but getting to this stage what I have realised is it’s not about giving up, it’s about the ability to let go, which to a mother of a young one is almost impossible. I want my boys to have a normal life, they don’t need to watch me suffer like this, it must be hell for them. I know it’s hell for me. I’m sorry if this is depressing, I’m not sugar coating life anymore, this disease is absolutely shit and I want people to know how shit it is. And I know it’s shit when I turn on the news and hear that people with motor neurone disease are exceptionally considered for the new assisted dying laws in Victoria. It makes me sad to see the billions and billions of dollars that go to funding cancer research every year and yet a disease like MND where it’s a death sentence from the start, still so many people don’t even know what it is. It’s such a shame. We need to fight for awareness and a cure. Please tell me you will do your bit, even if it’s spreading the word, telling people you have a friend with mnd, and explaining what mnd is....Anyway enough from me, thanks for listening ❤️ I hope you’re all well xxxxx
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$41,865 of $70,000 goal

Raised by 401 people in 16 months
Created March 5, 2018
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