A "glamorous" mum-of-eight has died aged just 47 - after spending her last years inside her house to avoid people staring at her.
Nicola Kilby's son Kieran has told of how she could barely bring herself to look in a mirror after a rare illness changed her appearance. She fought an inflammatory blood vessel disease for five years but the condition, Wegener’s Granulomatosis (GPA), had already started to change her appearance before she was diagnosed.
The condition attacks the ears, nose, sinuses, kidneys and lungs and, in Nicola's case, left her deaf in both ears, damaged her soft pallet to the point that she struggled to talk, and caused her nose to collapse.
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Nicola, a devoted mother and grandmother, died last month, after spending a number of years at home because she was so scared of strangers judging her appearance. Now Kieran, 25, hopes to raise awareness of GPA, and is fundraising towards his mum's funeral costs and for Vasculitis UK research.
He told Birmingham Live : "My mum was an amazing person, she put everyone before herself. She was very outgoing, she was one of the most glamorous people I've ever met.
"She adored her children and her grandchildren and gave anyone who came through the door the warmest welcome, like they were family. She was a very strong woman and even when she was in the worst pain imaginable, she'd never let on. She didn't want to subject anyone else to what she was going through."
Nicola lived in Cirencester in the Cotswolds with her husband-of-ten-years, Kevin. She leaves behind eight children aged between eight and 27.
Of his mum's battle with GPA, hotel worker Kieran said: "It's one of the most horrendous things I can imagine anyone going through. One of the things my mum struggled with most was how dramatically her appearance changed. It ate away at her nose, she became deaf in both ears and she lost a lot of her soft pallet so she couldn't talk properly anymore.
"Something minor like a cold would really affect her, to the point she could end up in hospital. It made the covid pandemic very difficult for her. The doctors originally said she could live for ten years with it, but it affected her very rapidly. It got to the point where she couldn't even use the stairs, she was so weak.
"It was hard for my mum because she didn't leave the house for years. She was so self-conscious about people staring at her.
"Even looking in a mirror was too difficult for her because of the damage it did to her nose. None of us have any pictures of my mum from the past five years because she wouldn't allow it - not even with the grandkids on her birthday."
Kieran recalled his mum's reaction to an episode of 'This Time Next Year', with Davina McCall, where a woman from Redditch with vasculitis was given a prosthetic nose. "All my mum ever wanted was a normal nose," he said.
"It was weird when she saw that episode on TV because most people have never heard of GPA, it's not a word you hear often like cancer. My mum started asking questions about prosthetics. We all started looking into getting her a nose for Christmas, but all the clinics we could find were in America or they were extortionate."
He added: "Not only did it affect her physically but it had a huge impact on her mental health as well. Because she wouldn't leave the house, she became very isolated.
"Me and my siblings bought her a French bulldog to keep her company. It got to the point that she was so lonely that she started accepting random friend requests from strangers on Facebook so she had some friends to speak to. That's something that really stuck with me.
"She went from being a normal outgoing mother to feeling self-conscious. She just wanted to be able to take her children to the park and do normal mum things, but it changed every part of her life completely."
Kieran has set up a GoFundMe page to help pay towards his mum's funeral costs. Money raised will be shared between the funeral, charity Vasculitis UK and a memorial bench to give Nicola's children a place to visit and remember her. To donate, visit the Go Fund Me page.
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