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£15,167raised of £37,500 target by 528 supporters

Weʼre raising £37,500 to pay for lifesaving treatment in the USA

Neath, Port Talbot, UK

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Story

My name is Hannah Amelia Evans I'm 27 and from South Wales. In desperate need of life saving treatment in the USA, without this treatment I'll die. My conditions have deteriorated a lot over recent years and this treatment is only available in the USA. The chronic systemic condition that needs treating is called mast cell activation disorder (MCAD). UK specialists, consultants and Doctors have all said I desperately need this treatment as I am so antibiotic resistant now I'm in constant danger of picking up an infection which causes my body to start shutting down, quickly becoming life threatening which is terrifying for me and my family.

The conditions I have are....

1. Ehlers Danlos Syndrome EDS, which is a very complex connective tissue disorder which effects sufferers differently.

2. POTS, postural orthostatic tachychardic syndrome, which for me is chronic and systemic. My bodies autonomic system doesn't work properly, so everything my body is meant to do automatically such as control heart rate, blood pressure, body temperature, digestion etc, doesn't work. This wreaks havoc on my body and my ability to live day to day without medical intervention.

3. Mast cell activation disorder also known as MCAD is a systemic disease where my mast cells are aggressive and hypersensitive. Also the walls of my white blood cell break down very easily causing my body to attack itself and means my immune system doesn't work at all. For me it also causes very high blood histamine levels, which means I'm constantly at risk of life threatening allergic reactions to everything and anything. Also my mast cells attack our immune system which results in me having Multiple life threatening problems as my body can't fight off even the smallest virus or infection, so I become critically ill very quickly. This condition has attacked my immune system so badly I have to wear a mask in public. I am now resistant to every antibiotics except two. This is why the treatment in the USA is my last chance.

I have to take over 100 oral meds and 16 IV injections via my Hickman line 4 times a day. My Hickman line is a visible line that goes straight into the centre of my chest, that then goes straight into my heart.

Due to the complexity of how these conditions effect me which is very rare theres NO funding on the NHS in ANY UK hospital. Because of this I've had to set up this page to fundraise for life saving treatment, as I already have to pay for some of my daily medications and 3 monthly appointments to see private specialist consultants in London.

My parents have payed £80,000 already on my medical treatments, appointments and medications over the last 5 years, when I become immobile and get seriously unwell in hospital.

I spend up to 60% of the year on IV treatments at home or in hospital. I've exhausted every other option and written to government members and my NHS trust. I'm in desperate need of this treatment in down town New York hospital, if I don't get this treatment my life will be cut considerably shorter and I will die.

Living not knowing if you will be able to afford your life save treatments is terrifying! Please help me get this life saving treatment I desperately need, please donating and sharing my page.

I now wonder why isn't my life as important as anyone else? The NHS has a 70th anniversary this year, why won't they allow me to live 70 years? Why is MY LIFE expendable.

Thank you for you kindness and generosity it means a lot, thank you. If you'd like to follow my complete journey please follow my facebook page @medicsmylineandme.

Thank you x

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Updates

8

  • Hannah Amelia Evans1 month ago
    Hannah Amelia Evans

    Hannah Amelia Evans

    1 month ago

    Also very importantly we'd like to thank all of you who have supported Hannah financially, physically and emotionally, to our community, to local groups, small charities, schools, individuals young and old who have dug very deep to make this trip to America even possible. Without you all none of this would be happening and we thank you from the bottom of our hearts. Hannah and Helen x

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  • Hannah Amelia Evans1 month ago
    Hannah Amelia Evans

    Hannah Amelia Evans

    1 month ago

    More Good news we've had positive response from Virgin Airlines and they are willing for Hannah to fly to American via their special assistance service. It's complex process before booking flight and so get a hospital admission date, due to all the necessary paper work, but the fact their willing to help Hannah is in its self a miracle, as we have been trying for weeks to get any airline to even open discussions with us. We are tentatively thrilled and at last there seams to be light at the end of this particularly long rockie tunnel at last

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  • Hannah Amelia Evans1 month ago
    Hannah Amelia Evans

    Hannah Amelia Evans

    1 month ago

    We've now raised Hannah's USA assessment and initial treatments target of £13,500 so your wondering why we have new target £37,500. The Welsh Health department and health board are still refusing to fund 3 US designed treatments Hannah needs when she returns home from USA. So we'll again have to pay for It at UCL.Unless we can change their mind and the law, it's currently going to cost minimum of £24,000 to buy the drugs to give Hannah the full treatment she needs to keep her stable and most importantly to live a relatively demedicalised life.

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4 months ago

Hannah Amelia Evans started crowdfunding

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Page last updated on: 8/15/2018 9:05 AM

Supporters

528

  • Charlie Edwards

    Charlie Edwards

    Aug 15, 2018

    £10.00

  • Helen Michael

    Helen Michael

    Aug 14, 2018

    Wishing you all the best xx

    £50.00

  • Tracey Clifford

    Tracey Clifford

    Aug 13, 2018

    I like round figures. Keep strong Annie. We are rooting for you lovely. Lots of love, Tracey, Dean & Daniel xxxxxx

    £50.00

  • Tamzin Fetch

    Tamzin Fetch

    Aug 11, 2018

    £2.00

  • Anonymous

    Anonymous

    Aug 9, 2018

    Good luck lovely xxx

    £30.00

  • bret morgan

    bret morgan

    Jul 22, 2018

    keep fighting trouble x

    £50.00

  • Jewels

    Jewels

    Jul 18, 2018

    May you be blessed with everything you need. Jewels

    £100.00

Hannah Amelia Evans

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About the fundraiser
Hannah Amelia Evans

Hannah Amelia Evans

Neath, Port Talbot, UK

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