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Sue Milne

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Great North Run - Half Marathon for The British Porphyria Association because I want to help my nephew and other sufferers

215 %
£645.00
raised of £300 target
by 34 supporters
Donate
  • Team members: David Milne - Brother
  • Event: Simplyhealth Great North Run 2019, 08 Sep 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

Thanks for taking the time to visit my JustGiving page.

I’m running The Great North Run Half Marathon for my little Nephew - Riley. 

Riley suffers from Erythropoietic Protoporphyria or EPP for short.

The photo above is an example of what happens to Riley from exposure to light. This was taken after returning from a school trip. 

While most people love a day in the sun, Riley's condition means he has a hyper-sensitivity to light. As a result, any time spent outside for him has to be very carefully considered.

In fact, it's not just sunlight but any strong light. People with EPP have a shortage of a particular enzyme which normally helps to convert elements in their blood by adding iron to it. 

As blood passes through Riley's skin, these elements absorb energy from light which sets off a chemical reaction that damages the surrounding tissue and causes Riley to experience intense burning pain and swelling.

There is no cure and no easy treatment. 

After an attack, the burning sensation can last for days and keep him awake in dreadful pain. No painkillers work and only time out of light will make it subside. 

Suncreams also don't protect him, so while we're all enjoying the beauty of a sunny day, Riley has to cover up...wearing hats, arm guards, gloves and any protection he can find while also seeking shade or using an umbrella. 

Despite this, he gets on with his life with a quiet determination, trying to do all the things that a 'normal' 11 year old wants to do.

However, he's always aware of the dangers of being outside for any real length of time poses for him. Also, because EPP affects iron production in his blood, Riley has to have yearly liver checks as he has a higher chance of developing liver problems.

As his condition is so rare, it means that it's only known by people that are trying to cope with it. 

The charity relies on your generosity to continue to do the great work in helping improve the quality of Riley's and other sufferers lives.

Thank you so much for any donation you can give. This is a small charity, that really does need all the help they can get. 

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.

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