A former University of Liverpool student is battling constant pain and chronic headaches to raise awareness of a rare disease.
Nikki Deeley was diagnosed with Fibrous Dysplasia in her skull when she was just 16 years old.
The rare bone disease, which means tumours grow in place of bone, is estimated to occur in one in every 300,000 to 1,000,000 people - meaning there are between just 66 and 221 sufferers here in the UK.
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But Nikki said she is determined to "just get on with it" and recently completed a year of charity walks and runs to raise awareness of the condition.
Due to the rarity of the disease, Nikki wasn't diagnosed until she was 16 even though she had been experiencing extreme pain since she was 13.
She said: "It took three years to actually get diagnosed because it's so rare. I did lots of different tests and nothing was coming up.
"Eventually a radioactive bone scan showed there was something in the skull. I was suffering from bone pain all over and ended up suffering from rickets as well due to the lack of vitamin D.
"It was bittersweet hearing the diagnosis. It was a relief to know what it was but then slowly finding out there was no treatment or cure was one of the hardest things.
"I've been in pain every day for 10 years now which makes it hard to deal with."
The 24-year-old from Winsford, Cheshire decided she would walk or run 10km for every person diagnosed with Fibrous Dysplasia in the UK.
She completed a number of challenges including climbing the three peaks, climbing an active volcano in Iceland and running multiple races including the Manchester Half Marathon and the Liverpool Santa Dash.
Nikki completed the charitable walks and runs for the Fibrous Dysplasia Foundation, despite battling daily pain and chronic headaches that at their worst can paralyse half of her body.
Nikki told the ECHO : "It's a constant level of pain and there's some days that are worse than others.
"I'm being treated for chronic migraines which are potentially related to the condition because my skull is pressing on my brain a bit.
"It means sometimes I get hemiplegic migraines which is like a stroke where you lose feeling in half of your body.
"It's tough but I look at it as if I've got two choices.
"I can either just get on with it or give up. I don't think giving up is an actual option so I make the best of what I've got."
Nikki's charity work has seen her travel across the UK and across to Iceland.
She hopes she can raise both money and awareness for the disease that has had little research into it because of the rarity.
Over the past 12 months she has covered 2,215km through walking, running and hiking, which equates as 10km for every person with the disease.
Nikki said her hardest but most rewarding challenge was the Three Peaks — where she climbed Scafell, Snowdon and Ben Nevis.
Nikki said: "I think the Peaks was probably the hardest because I wasn't sure how I'd handle the changes in altitude.
"I struggle with altitude due to the pain, but I was determined to get through it. I was proud of myself for managing to do it despite everything else.
"Everyone has been great. I've had a lot of my friends support me, financially in terms of raising money for charity, but also coming and climbing the mountains with me.
"They support me day-to-day when I'm not well. They see me on my good days and my bad.
"They have an understanding of it which is important."
Nikki is now setting her sights on her next charitable venture.
She said: "The money will be put into research and supporting people. Fibrous Dysplasia Foundation has now got a big following in terms of the people with the condition.
"There's now a support group of people all over the world and they're running webinars to get more people involved to understand the work that's been done.
"I'm going to be in contact with the charity to see what I can do in terms of support in the future.
"And I'm also looking to see what can be my next challenge. I'll have to wait and see what sparks my interest."
You can donate to Nikki's fundraiser here.
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