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£457raised of £500 target by 16 supporters

Weʼre raising £500 to Help to fund daughters Narcolepsy treatment, Lots of trips to London to be made and can make it special.

Luton, United Kingdom

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Story

My Daughter is almost 21 years old. She has Aspergers, autism, Kidney problems (scarred kidney due to kidney stones) and recently discovered Idiopathic Hypersomnolence (Narcolepsy). Picture above is her in 2013 when she had her first sleep study aged 16. She currently shares a room with her sister, and would like her own personal space, so we would love to make he own space in room for when she needs to have that chill time at same time as being watched. She loves ambient lighting and LED colourful lights. She also enjoys visits to cinema so can relax watch a film and maybe fall asleep.

We are raising some money for trips to London to Guys Hospital to get her some treatment to help get proper diagnoses to help her quality of life get better. We are un employed so this is gong to cost a bit travel wise. She can not work I am her Mother and full time carer. She needs a better quality of life. She deserves a better life I wish I could take away all her problems from her. We can help get her the bits needed to make her feel more normal than she does now.

She has been told can not drive as could fall asleep and possibly never be able to apply for drivers licence, she can not go out alone as she could get lost falls asleep anywhere with no warning , even showering she needs to be watched but has some privacy now in home as she has had a wet room installed, so is very vulnerable. Her quality of life is not too great, she even had to give up college as she got severe depression due to lack of awareness and concentration. Her condition has got worse over past few months, and we are now going for the vital 2nd opinion as other has been signed off sent back to GP. Sitting and waiting for disaster is not an option any more. She get Hallucinations now every time she falls asleep they are so vivid and feel so real and scary.

For people that don't know what Narcolepsy is: is a sleep disorder characterized by excessive sleepiness, sleep paralysis, hallucinations, and in some cases episodes of cataplexy (partial or total loss of muscle control, often triggered by a strong emotion such as laughter). There is no known cure and here in UK not much medicaton wise, any available don't work due to autism causing adverse affects.

Thank you so much for looking at this. Any donations will be put towards travel and over night stays while she is in sleep studies. Also get some ambient lighting. Maybe a Day out in London in between appointments. Also can decorate her room make it more personal to her where she shares with her sister. Make her life more bareable and help her to move onward and upwards.

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Updates

46

  • Angela Hart18 days ago
    Angela Hart

    Angela Hart

    18 days ago

    Just had call from Doctors, at long last a referral done to Guys hospital in London, now we just wait the appointment. It on wards and Upwards now. :-) Let's get this sorted and get Sam back on track.

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  • Angela Hart1 month ago
    Angela Hart

    Angela Hart

    1 month ago
    Update from the Page owner

    Share this update to help us raise more

  • Angela Hart1 month ago
    Angela Hart

    Angela Hart

    1 month ago

    This weather is really causing loads of attacks, Poor am just sleeping all the time and being stuck in REM. We all love summer how ever she prefers autumn and winter as it colder. Looks like we got this heat for a bit longer too we not used to it here in UK.

    Share this update to help us raise more

7 months ago

Angela Hart started crowdfunding

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Page last updated on: 8/3/2018 3:05 PM

Supporters

16

  • Nick Shannon

    Nick Shannon

    Jul 27, 2018

    If I had a better paying job, I'd happily pay the full 500 quid for Sam :)

    £15.00

  • Anonymous

    Anonymous

    Jul 27, 2018

  • Duncan Roberts

    Duncan Roberts

    Jun 11, 2018

    Best wishes to you all!

    £20.00

  • Nick Shannon

    Nick Shannon

    Apr 24, 2018

    I know it's not that much (I'm on a bit of a budget atm) but you've got all my support, Sam! I'll try to donate more when I next get paid 🙂💛💛💛

    £15.00

  • Chiozaki Rioku

    Chiozaki Rioku

    Mar 22, 2018

    £5.00

  • Chris Barlow

    Chris Barlow

    Feb 27, 2018

    £40.00

  • Anonymous

    Anonymous

    Feb 27, 2018

Angela Hart

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About the fundraiser
Angela Hart

Angela Hart

Luton, United Kingdom

I am Sam's Mother and also her Carer. She really suffering at moment and we in process of getting 2nd opinion.

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