“Glamourous and lively” best describes the loving mother and grandmother before an extremely uncommon disease completely changed her appearance.

A “glamorous” mother of eight who spent her last years in her house to avoid observers and who passed away at the early age of 47 was found to have passed of cancer.

After Nicola Kilby’s appearance was altered by a rare disease, her son Kieran said that she could not bring herself to gaze in a mirror for a long time after the alteration had place. She fought Wegener’s Granulomatosis (GPA), an inflammatory blood vessel disease, for five years before she was diagnosed with it; nonetheless, her appearance had already started to alter before she was recognized as having the condition.

The sickness affects the ears, nose, sinuses, kidneys, and lungs; in Nicola’s case, it caused her nose to collapse, leaving both of her ears deaf, and destroyed her soft palate to the point that she found it impossible to talk because of the damage.

Nicola, a devoted mother and grandmother, passed suddenly a month ago after a period of time spent living at home owing to the great worry she had with the criticism that other people directed toward her looks. Kieran, age 25, is presently doing a fundraiser to raise money for Vasculitis UK research as well as the burial costs for his mother in an attempt to bring more attention to GPA.

According to what he shared with Birmingham Live, “my mum was a beautiful person, and she put everyone before herself.” She was one of the most gorgeous and vibrant people I’ve ever had the pleasure of meeting.

She loved her children and grandchildren very much, and she made everyone who came into the home feel like they were a part of the family by greeting them with open arms. She was a very strong lady who would never confess to herself that she was in any amount of pain, not even the most severe. She did not want anybody else to have to go through what she was going through.

Nicola and her husband of 10 years, Kevin, made their home in the town of Cirencester, which is located in the Cotswolds. She leaves behind eight children, ranging in age from eight to 27 at the time of her passing.

Kieran, an employee at the hotel, said that his mother’s fight against GPA was “one of the most awful things I can imagine anyone going through.” My mother had an especially tough time adjusting to how radically her looks altered throughout the course of her life. She lost a significant portion of her soft palate, the cartilage in her nose began to deteriorate, she had hearing loss in both ears, and she was no longer able to talk properly.

Even a little illness like a cold would have a major effect on her, to the point that she could need to be admitted to the hospital. Because of this, the covid pandemic was pretty difficult for her to deal with. In spite of the fact that her first prognosis from the doctors was that she might live with it for 10 years, she was affected by it pretty rapidly. She soon grew so weak that she was unable to even use the stairs once her condition worsened.

It was tough for my mother since she didn’t leave the home for years because she was sick. She was acutely aware of the gazes of others directed at her.

Due to the discomfort it created in her nose, she had a very difficult time simply looking in a mirror. Even doing so was a challenge for her. Because my mother has not let any of us to take photographs of her in the last five years, not even on her birthday when she was celebrating with her grandkids, we do not have any photographs of her.

A lady from Redditch who suffered from vasculitis and was treated on an episode of “This Time Next Year” featuring Davina McCall was fitted with a prosthetic nose. Kieran recalled his mother’s response to the incident that had occurred. He said, “All my mother wanted was for me to have a regular nose.”

It was weird for her to witness that show on television since, unlike cancer, GPA is not something that the majority of people are familiar with. My mum started doing some research about prostheses. Because every clinic that we were able to find was either in the United States or had very high fees, none of us were able to get her a nose in time for the holidays.

In addition to the physical harm it caused her, he went on to say that it also had a substantial detrimental impact on the mental health she was experiencing. Because she wouldn’t go out of the home, she developed severe cases of social isolation.

My siblings and I decided to get our mother a French bulldog so that she would always have someone to keep her company. She ultimately reached a point on Facebook where she felt so alone that she started accepting friend requests from people she had never met before just so she would have someone to speak to. That left a deep and abiding imprint on my mind.

She went from being a normal, outgoing mother to one who struggled with feelings of insecurity. She merely wanted to be able to take her children to the park and engage in other things that are considered to be typical of a mother’s role, but it ended up drastically changing every part of her life.

Kieran has established a GoFundMe page in order to collect financial contributions for the expense of burying his mum. Nicola’s children’s memorial bench, Vasculitis UK, and the charity will each get a share of the monies generated in order to help pay for the funeral expenses. To make a contribution, please go to the Go Fund Me website.

Hello, My name is Kieran, and in addition to being a son and a brother, I am also a grandson. To ease the financial burden on my family at this trying time, I am organizing a fundraiser to donate money to the charity Vasculitis UK and to pay for the funeral of my mother. Permit me to simplify it by breaking it down into two key aspects; in return, I ask that you read on and try to understand my reasoning.

My mother suffered from a long-term condition called Wegener’s Granulomatosis, which is also referred to as GPA in certain circles. One form of GPA is referred to as primary systemic ANCA associated vasculitis (AAV). The most common manifestations of this condition are the various vasculitis diseases. In most cases, the infection will manifest in the kidneys, lungs, ears, nose, and sinuses. Because GPA is characterized by inflammation of the tiny blood vessels, especially the capillaries, it is a very difficult condition to treat. It is not a pleasant thought that even a little cold may result in hospitalization from something as simple as a sniffle. She persevered for more than five years, enduring pain up to the point when she could no longer do so.

Two: despite the fact that there are many of us, funerals are quite pricey, and this lady deserves the best possible send-off conceivable; but, some of us are unable to pay the fee since we do not have enough money. The realization that we can’t do it on our own is both the most difficult and the most disheartening part of this process. We don’t want her to leave this world in a manner that isn’t consistent with the kind of person she was or the path she took in her life. She was the epitome of elegance and style in her day. A caring mother, a charming wife, and the most wonderful friend that anybody could ever want to find! In every circumstance, she prioritized the needs of others before her own. We will need your help to get through this, so if you are able, please make a donation.

Then, what exactly is the plan?

Through your generosity, we are able to help the nonprofit organization of your choice, which is Vasculitis UK.

The bulk of the funds that are donated will go to the group that is working to find a cure for this dreadful illness. This will make life for those who are afflicted with the disease easier while also facilitating the advancement of research into the disease’s diagnosis and prevention. All of this information will be made public, along with facts on the amounts that have been given and the methods that you may also use to generate money.

The remainder is going to be utilized for the burial arrangements for her. allowing Nicola’s family the opportunity to say their last farewells while also seeing her leave in grand fashion. She was a linchpin in the lives of a great number of individuals, and without her, they are beyond hopeless; thus, any stress that may have been imposed on the family during this incredibly hard period is relieved.

We apologize for bothering you with this request, but if you are able to provide any amount, even a tiny one, it would help give meaning to our mother’s life and guarantee that others who are going through similar struggles won’t have to suffer in the same way that she did.

By Elen

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