A DARWEN girl whose muscles turn to bone because of a rare genetic condition has inspired a father and daughter to climb Kilamanjaro to raise funds.
Ten-year-old Luciana Wulkan, of Spring Meadows, has fibrodysplasia ossificans progressiva (FOP), a condition that turns muscle into bone, leaving victims frozen into position.
Eventually, this extra bone-growth crushes the internal organs which can prove fatal.
The incurable condition is so rare only 200 people in the world have it.
When Luciana was born she appeared to be perfectly normal except that her big toes were shorter than the other toes.
Nicola Morris, 24, heard of Luciana’s condition from her father Sandro, who she works with at Catersure, in Blackburn.
She was so determined to help raise money for research and for Luciana’s every day medical needs, she decided to take the challenge of a lifetime with her own dad Keith, and walk to the summit of Mount Kilimanjaro in October.
Nicola, of Fernhurst Farm, Blackburn, said: “I wanted to do something because it broke my heart knowing what she’s going through.
“I want to raise awareness of the condition, I only knew about it because I work with her father.
“At hospital her parents have to tell the doctors what to do because there is so little information - there are no UK doctors for it.
“She can’t be a little girl - she can’t run around and she can’t ride a horse because of support she would need and the unpredictability of the animal.
“As soon as she has a traumatic incident, her muscles turn to bone.”
Last year Nicola set up a website called www.lucianaswalk.com to generate funds and support from local people and businesses.
She said: “Comic Relief going to Kilamanjaro has stolen my thunder a bit, people say that they’ve already donated to that, but I’d set up my project before that.
“So far the Golden Cup in Blackburn Road, Darwen, are pledging to raise in the region of £2,000.”
Luciana’s dad Sandro said: “I was overwhelmed when Nicola told me she wanted to do it. It’s very stressful even organising something like this.
“Luciana is monitoring the donations and the website and she’s buzzing that her favourite teddy is being used as the logo for the walk.
“We need to raise as much awareness as possible.”
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