Making memories & my kids futures

Hi, I’m Lisa.

I’ve just turned 30 and have 2 young children aged 9 & almost 4.

in December 2020 I lost the use of my legs completely, followed by my arms/hands - I have no core/upper body strength & limited hand function. I’ve lost my hearing too & my eyesight is deteriorating.

Despite numerous tests & hospital admissions, we still don’t know what is causing this.

All we know is I have severe nerve damage which is degenerative & is spreading throughout my body.

I literally can’t do anything for myself, even basic things like cutting up my food or wiping after using the toilet (tmi sorry)

You can read my full story on instagram (@lisamarieharris_) for more details on what this is all about.

I’ve been told to create a gofundme so many times but I’ve refused & i feel awful about creating this but I’m at a point where I’m desperate. In recent weeks, everything seems to be declining fast with new symptoms appearing. I feel weaker than ever - to the point where I can’t even manage light physiotherapy & I’m in constant pain.

I feel let down by the nhs & forgotten about by the professionals in charge of my care. So I’m hoping by going private ill be able to finally get answers as to what is going on.

We’re aware that there is no ‘cure’ for this but I’m also hoping to use some funding to get aid’s & equipment to help me get a little independence & a better quality of life too.

I’m a young mother unable to do anything for myself with young children who I can’t do anything for either & it takes its toll both physically & mentally.

So please no judgement because it’s taken me a lot to ask for help but right now I really am desperate for answers & a more comfortable, better quality of life.

I also set the goal at 2k because I have no idea of the actual cost of private health care so if anyone is clued up please let me know so I can adjust accordingly

Sorry for the long read but thank you for reading

My story

UPDATE

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I’ve had lots of messages, thank you all for your support as always.

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After 2 weeks in one hospital, Thursday I was transferred to another to hopefully get a home care plan in place

Eating or drinking can be dangerous for me so I’ve had a permanent feeding peg fitted through my stomach wall, my voice has completely gone & the nerve damage has stopped the bottom of my lungs working properly.

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We’ve removed Leo from school for summer early to shield him from hearing anything because obviously word travels fast in a small village & he doesn’t need the burden just yet. Lunas a lot younger & doesn’t understand so school keeps her busy thankfully.

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No name yet but a really rare neurological disease of some sort which has ravaged my body & has now gone too far, its un-survivable, we were told last Thursday.

I don’t know how long etc so I’m focusing on making memories with Leo, Luna, Mam, Dad & Luke now.

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Grateful for all the love, support & everything you’ve all given me on my journey. Now it’s time to make memories & fight for as long as I can

Any future donations will go towards making family memories & Leo & Lunas futures