Your friends are fundraising. Don't miss out, opt in.

We did it!

Angela Hart raised £457 from 16 supporters

or

Start your own crowdfunding page

Closed 19/11/2018

0

%

£457raised of £500 target by 16 supporters

    Weʼve raised £457 to Help to fund daughters Narcolepsy treatment, Lots of trips to London to be made and can make it special.

    Luton, United Kingdom
    Funded on Monday, 19th November 2018

    What is crowdfunding?

    Crowdfunding is a new type of fundraising where you can raise funds for your own personal cause, even if you're not a registered charity.

    The page owner is responsible for the distribution of funds raised.

    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.

    Follow us on Facebook also:

    https://www.facebook.com/SamandherNarcolepsy/ (Search Sam and her Narcolepsy)

    Updates

    55

    • Angela Hart1 month ago
      Angela Hart

      Angela Hart

      1 month ago

      Got the letter today from Guys about our daughter (Sam) first appt regarding Narcolepsy and Cataplexy. They doing a Sleep study with actigraphy, over night sleep study with MSLTs, check HLA in blood ( normal Blood Test) and probably consider also check her CSF orexin. This means CSF is done via Lumba Puncture poor thing I really feel for her. She is ADHD and aspergers and hates needles.

      Share this update to help us raise more

    • Angela Hart2 months ago
      Angela Hart

      Angela Hart

      2 months ago

      Appointment set for 28th November for overnight stay and full day sleep study on 29th. Sam not looking forward to this 1 bit, Overnight sleep study and 5 or 6 naps during the following day. We are hoping they can find out what actually going on and give some medication to help with the day and night hallucinations as well as sleeping out of control with anxiety. Tiring work this back and forth to London. We will get this sorted and have our daughter back with any luck.

      Share this update to help us raise more

    • Angela Hart2 months ago
      Angela Hart

      Angela Hart

      2 months ago
      Update from the Page owner

      Share this update to help us raise more

    1 year ago

    Angela Hart started crowdfunding

    Leave a message of support

    Page last updated on: 11/1/2018 3:09 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

    Great people make things happen

    Do you know anyone in need or maybe want to help a local community cause?

    Create you own page and donʼt let that cause go unfunded!

    About Crowdfunding
    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. Well, today (13 October 2018) we went to Guys Hospital in London. They want to do a full sleep study, and see what happens from there.

    Report this Page