'Glamorous' mum dies at 47 after rare condition forced her to spend years indoors to stop people staring

Kieran Lane remembers his mother as a 'beautiful, glamorous and bubbly' woman who would do anything for her children. But Nicola Kilby spent her last few years at home, not wanting to go out and refusing to have her photograph taken, worried that people would stare at her.

Nicola had eight children and six grandchildren. Photo: Kieran Lane
Nicola had eight children and six grandchildren. Photo: Kieran Lane

She was even reluctant to appear on FaceTime calls with family members.

The mother-of-eight suffered for more than five years with a little-known condition called Wegener’s Granulomatosis - more commonly known as GPA - which inflames blood vessels, affecting ears, nose, sinuses, kidneys and lungs.

For Nicola, the effects GPA had on her appearance left her really self-conscious, to the extent that she withdrew from society to avoid people seeing how the illness had changed her appearance until her death last month at the age of just 47.

Her son, 25-year-old Kieran, who lives in Sutton Coldfield, is now raising awareness of GPA, as well as fundraising towards the funeral costs and for Vasculitis UK research.

"My mum was truly a rare person," he said. "She was very glamorous, outgoing, caring. She was just unique which set her apart from everybody else.

"She was the best mum, best sister, best daughter. You'd never forget that you had met her.

"As a parent she always wanted the best for us. She'd push us to do anything and everything."

Nicola is remembered as a fun mum who gave so much to her children. Photo: Kieran Lane

But Nicola, who lived with her family near Cirencester in Gloucestershire, had a cheeky side.

Kieran remembers one occasion when he was in primary school when his mum came to collect him and his sister to 'take them to the dentist'.

"I remember thinking 'we have been driving for a while, why is it so far away'," he recalled.

Eventually they parked up at Alton Towers, telling her kids: "I know I shouldn't, but I wanted to take you to your first theme park, you deserve it."

Kieran added: "I remember looking at her and thinking she was the most beautiful person I have ever seen."

Having a Halloween birthday, trick or treating with her children often ended with a visit to their grandparents, while on Christmas Day she organised her children in age order on the stairs, not letting them into the living room until 9am, at which point they'd be escorted in one at a time before the madness of present-opening began.

Halloween traditions were important for Nicola and her children. Photo: Kieran Lane

While there would be tears of joy from the kids, Nicola would be giggling away, telling her children she'd 'had a word with Santa' to get them toys she claimed had sold out when she'd gone to the shops earlier in the year.

But life threw its challenges towards Nicola. She spent time as a single parent, and while she worked at a number of jobs, including time at a hospital, she eventually had to give up work after being diagnosed with MS.

Despite this, she didn't let the MS diagnosis drag her down.

"It allowed her to focus solely on her children," added Kieran. "She never let it affect her. She took everything in her stride."

During this time she remained a social butterfly, living in a town where everyone talks to each other in the street.

But just over five years ago things ago, Nicola's life changed completely when she noticed her nose was starting to swell up.

Nicola has MS before being diagnosed with Wegener’s Granulomatosis five years ago. Photo: Kieran Lane

Weeks of extensive tests with the GP and local hospital eventually led to a diagnosis of GPA.

Over the coming months her nose continued to swell before it started to collapse. She kept her bubbly personality and tried to maintain her glamour despite frequent trips into hospital.

"For about a year she was worried about what people thought and just go to my nan's," Kieran said.

Nicola would use make up to try and cover what had happened to her nose, and made sure her face was covered where possible, keeping her head down if she was out for a walk in the park so people wouldn't recognise her.

But she also refused to appear in photos or videos after her nose started collapsing and she received her diagnosis.

"I have one video of her (since her diagnosis) where her hair is covering her face," Kieran said.

The family thought the condition was slowing, but at around the time of the first Covid lockdowns in 2020, it "attacked her aggressively".

Nicola had to shield, as GPA also attacks the immune system, leaving her susceptible to colds, flu and latterly Covid-19. While she lived with her husband, Kevin, who she married 10 years ago, and five of her children, the lockdowns meant she was unable to see other relatives.

Nicola and Kevin were married for 10 years. Photo: Kieran Lane

FaceTime was the only way to contact during these times, but she was reluctant to appear as her condition deteriorated.

"Even with me she would be conscious about going on camera, about what I felt or thought," Kieran explained..

As she withdrew from social life, Nicola started using Facebook more, reposting older photos of her before her illness took hold before accepting friend requests from people she'd never met.

Kieran said his mother wanted to reach 5,000 friends as it "made her feel included in something".

Her daughter Bethany got her a French bulldog as a birthday present to keep her company.

"It cheered her up quite a lot," Kieran said. "She had someone to talk to, someone to offload herself to."

Nicola became weaker as her condition took hold. Trips into the garden became less and less, while a stairlift and wet room were installed. One day, Nicola was so weak she collapsed as she came out of the shower, breaking her foot.

Nicola had eight children and six grandchildren. Photo: Kieran Lane

Last month, more than five years after receiving her diagnosis, Nicola died.

Kieran has now set up a fundraising page that will help cover funeral costs and raise money for Vasculitis UK, a charity that supports sufferers and pushes for more research into the illness.

Nicola always wanted to raise awareness of GPA, and her family are keen to ensure sure her legacy lives on.

"It's not like cancer, if people don't know about it how cant they look for the symptoms and go to the doctor?," Kieran asked. People can be affected differently, with early symptoms including nosebleeds or shortness of breath.

People with GPA can live up to 10 years after diagnosis, but Nicola only made five. The family hope that more support for families means people can live longer, be more comfortable and, eventually, be treated.

But they're also keen for Nicola not to be defined by her illness.

"There are going to be younger (siblings) at the funeral. I want them to remember mummy went out in the way she deserves," said Kieran.

"I don't want my mum to be in an unmarked grave and not have her favourite flowers (roses). She gave so much life into her kids and grandchildren.

"She was incredible. She was in a league of her own."

To donate, visit the GoFundMe page set up by her son, Kieran.

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