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Amy Williams

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Cardiff-Half-Marathon for The British Porphyria Association because to raise awareness and for a dear friend

80 %
£200.00
raised of £250 target
by 16 supporters
Donate
  • Event: Cardiff Half Marathon 2019, 06 Oct 2019

The British Porphyria Association

It aims to improve the understanding of Porphyria, by reaching out to patients, relatives, doctors and medical staff, etc. Early diagnosis is vital if we are to improve the quality of life for those affected by it. It also provides a social support system for sufferers and their families

Charity Registration No. 1089609

Story

Hi all,

A half marathon has always been on my bucket list to complete, and so towards the end of the year, I have signed myself up for the Cardiff-Half-marathon. I will not only be doing it for myself, but I will be doing it in aid of raising awareness and money for a charity; BPA- British Porphyria Association. The charity support's people with relatively rare genetic disorders. My reason for choosing this charity; because of a dear friend close to my heart inherited a rare condition. 

The day my friend became ‘paralysed’ was the day that changed her life forever. It started back in 2013 with little niggles; back-ache, headaches, and nausea, (nothing that you would immediately think life changing in any way), my friend had just started her new journey at university, which is where the story begins. It started off with frequent visits to the doctors- who put the symptoms down to 'partying too hard at university'.

Following multiple visits to the doctors and the hospital; the professionals were clueless as to what was the matter, with more failed visits it came back with negative results. Things continued to get worse, and not improve; following a seizure my friend was admitted to hospital. This is where the incident happened. This is where the story begins… one night whilst on admission at hospital following a recent seizure, when needing the urge to go to the toilet my friend collapsed to the floor, just collapsed without any warning her limbs gave way and would not facilitate any movement – after that point on my friend could not walk or had the ability to move her arms the basics that we take for granted. After three months of unconfirmed results, my friend finally got the diagnosis of Acute Intermittent Porphyria. This relatively rare condition is a metabolic disorder affecting the chemistry of the body causing neurological changes, a flare-up could result in my friend becoming hospitalised. It’s a lifelong condition, and anything can trigger the flare-ups, making life difficult and precarious. This impacted her in so many ways both physically, emotionally and mentally. Which is why I would like to take this opportunity to raise awareness for such a rare condition.

It is my desire to raise £250.00 (or more and exceed this value), to help such a worthy cause and to help, enable lives that are affected by these rare conditions. 

Thanks for taking the time to visit my JustGiving page. I really appreciate any donation, as it is going to a good cause, and will help provide care to those who need it. 

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Supporters

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