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Weʼre raising £5,000 to help fund for special clothing and garden adaptations for my daughter Alyssa.

Tonbridge, UK

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Story

Hi, my name is Alyssa and I would like to tell you about my story! I was such a happy child so bubbly and laughing all the time, playing outside with my brother and friends, until march 2017 just after my third birthday, our whole world got turned upside down.

In march 2017 we had the first BBQ of the year, it was so much fun. Playing in the water pit and chasing our shadows in the garden. Bedtime came round and we said bye to our friends. Mummy put me to bed like usual and went back downstairs.

I woke up a couple of hours later crying and in so much pain, I was scratching like mad and told my mummy and daddy it felt like my whole body was burning. Mummy got medicine and daddy wet some towels with cool water to wrap round me but nothing seemed to help. A couple of hours later I calmed down and fell back to sleep wrapped in cool wet towels.

The next day mummy got me into the doctors, it looked like I had burns everywhere. The doctor gave me some creams to try and some antihistamines to take. He seemed very puzzled by the whole situation. A couple of months went by - lots of doctors appointments came and went as it seemed every time I went outside my skin would burn up and I'd be in pain. I even ended up in accident and emergency as it was so bad but got turned away with them saying it's eczema and there's nothing they can do!

My mummy and daddy knew deep down that it was more than that so they pushed for me to be seen by the dermatologist. In the meantime we shut all curtains on the house and they stopped me from going outside and even to nursery. Excellent, my skin started clearing up, sun allergy maybe?!

Mummy and daddy spoke to the doctor and they were very skeptical about the idea but the dermatology department wasn't and referred me to Guy’s Hospital in London to see a top photodermatologist.

Waiting for our appointment to come through from Guy’s I was playing at the dining table when my grandad noticed my arms were getting redder by the second. The fluorescent lightbulb was directly above me and my skin started to burn. So not only was the sun causing this reaction it was also fluorescent lighting too! All light bulbs got changed to LED and I started clearing up again.

To this day I am still seeing the photodermatologists in London for regular checks, they are saying it's photo aggravated eczema, this means I have an allergic reaction to UVB rays (the sun) and also fluorescent lighting.

As you can imagine life is very hard as a 4 year old living with the curtains closed and not being able to go out, something as simple as the park or my back garden, but with your help and a little donation we would be able to transform our home so it's a safe environment for me to be in, the garden can be changed so I can go out and breath the fresh air without getting hurt and we can all have a little normality back in our lives!

The money raised for me would go towards special clothing for School and clothes for generally going outside.  Also bedding as we have been advised that everything has to be cotton, down to sheets and blankets. My mum and dad would be able to install something in the garden that would contain enough shade so I can play outside on a nice sunny day and not have to worry about me getting hurt and being poorly! 

Thank you you for taking the time to read my story,

Alyssa

xXx

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Nicola Trice

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    1 month ago

    Nicola Trice started crowdfunding

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    Page last updated on: 7/6/2018 8:29 PM

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      Nicola Trice

      Nicola Trice

      Tonbridge, UK

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