Till a rare illness drastically changed her looks, the devoted mother and grandmother was “glamorous and vivacious.”

A “glamorous” mother of eight who spent her final years in her home to avoid onlookers died at the young age of 47.

According to Nicola Kilby’s son Kieran, after a rare illness caused her looks to change, she could hardly bring herself to look in a mirror. She battled Wegener’s Granulomatosis (GPA), an inflammatory blood vessel disease, for five years, but before she was identified, her look had already begun to change.

The illness affects the ears, nose, sinuses, kidneys, and lungs; in Nicola’s case, it caused her nose to collapse, rendered both of her ears deaf, and damaged her soft palate to the point where she found it difficult to speak.

Nicola, a loving mother and grandmother, passed away last month after living at home for a while due to her extreme anxiety about other people criticizing her appearance. Kieran, 25, is currently raising money for Vasculitis UK research and his mother’s funeral expenses in an effort to spread awareness about GPA.

“My mom was a fantastic person, she placed everyone before herself,” he told Birmingham Live. She was one of the most vivacious and beautiful persons I’ve ever met.

“She adored her kids and grandkids and welcomed everyone who entered the house with open arms, treating them like members of the family. She was a very tough woman who would never admit to being in even the most excruciating pain. She didn’t want to make anyone else go through what she was.

Nicola and Kevin, her husband of ten years, resided in Cirencester, a town in the Cotswolds. She is survived by eight children, ranging in age from eight to 27.

Kieran, a hotel employee, described his mother’s battle with GPA as “one of the most horrific things I can imagine somebody going through.” My mother found it particularly difficult to adjust to how drastically her appearance changed. She lost a lot of her soft palate, her nose started to decay, she lost her hearing in both ears, and she was unable to speak normally any longer.

“Even a simple cold would have a significant impact on her, to the point that she might require hospitalization. It made the covid pandemic for her quite challenging. She was impacted quite quickly despite the physicians’ initial prediction that she could survive for ten years with it. She eventually became so feeble that she was unable to even utilize the stairs.

“My mother didn’t leave the house for years, so it was difficult for her. She was very conscious of others’ eyes on her.

She found it very challenging to even gaze in a mirror due to the harm it caused to her nose. My mother wouldn’t let us take pictures of her for the last five years, not even with the grandchildren on her birthday, so none of us have any of them.

In an episode of “This Time Next Year” starring Davina McCall, a woman from Redditch with vasculitis received a prosthetic nose. Kieran remembered his mother’s reaction to the episode. He said, “All my mother ever wanted was a normal nose.”

It was strange for her to see that episode on television because, unlike cancer, most people have never heard of GPA. My mother began to inquire about prosthesis. All the clinics we could locate were either in America or had exorbitant prices, so none of us were able to get her a nose for Christmas.

Not only did it hurt her physically, but it also had a significant negative effect on her mental health, he continued. She grew incredibly lonely as a result of her refusal to leave the house.

“To keep her company, my siblings and I purchased mom a French bulldog. She eventually became so lonely on Facebook that she began to accept chance friend requests from total strangers in order to have someone to talk to. That made a lasting impression on me.

She changed from being a typical, sociable mother to feeling self-conscious. She only wanted to be able to take her kids to the park and do other typical motherly activities, but it dramatically altered every aspect of her life.

In order to contribute to the costs of his mother’s funeral, Kieran has put up a GoFundMe page. The funeral, Vasculitis UK, Nicola’s children’s memorial bench, and the charity will all receive a portion of the funds raised. Visit the Go Fund Me page to make a donation.

Hello, My name is Kieran, and I’m a son, a grandchild, and a brother. I’m raising money for the Vasculitis UK charity and my mom’s burial in order to lessen the strain on the family at a difficult time. Let me break it down into two important elements, so please take a moment to read and comprehend why.

One – Wegener’s Granulomatosis, sometimes known as GPA, was a chronic illness that my mother endured. Primary systemic ANCA associated vasculitis is one kind of GPA (AAV). It is the variety of vasculitis disorders that is most prevalent. The kidneys, lungs, ears, nose, and sinuses are typically affected. GPA is a terrible disease to deal with because it is characterized by inflammation of the small blood vessels, particularly the capillaries. It’s not pleasant that even a minor cold could transform a sniffle into hospitalization. She held on for more than five years, suffering until she was no longer able to.

Two: Although there are many of us, funerals are incredibly expensive, and this woman deserves the nicest send-off imaginable, the expense is simply unaffordable for some of us. The hardest and most depressing thing to realize is that we can’t do it alone. We don’t want her to depart this world in a way that isn’t true to who she was as a person and in life. She was a glamorous, fashionable woman. A lovely wife, a devoted mother, and the best friend anyone could ask for! No matter what, she always placed others before herself. We can’t do this alone, so if you can, please donate.

What then is the plan?

Donations enable us to support the selected nonprofit, Vasculitis UK.
The organization fighting for assistance against this terrible sickness will get the majority of the money raised, allowing sufferers to live more comfortably and advancing research into the diagnosis and prevention of the illness. All of this will be made public, along with details on how much is contributed and specifics on how you may also raise money.

The remaining portion will be used for her funeral. letting Nicola’s family say their final goodbyes while also sending her off in style. She was a cornerstone in so many people’s lives, and without her they are beyond lost, easing any stress placed on the family in this extremely trying time.

We’re sorry to ask, but if you can provide even a small amount, it would help make our mother’s life meaningful and ensure that someone else who is experiencing similar difficulties won’t suffer in the same manner.