By Liana Jacob
THIS MUM-OF-THREE was beaten with sticks and told that she “ruined photos” by bullies that feared they might catch the rare condition that had “invaded her face” and left her wanting to die at just 13-years-old.
Volunteer co-ordinator, Christine Mae Brown (56), from Invercargill, New Zealand, was just five-years-old when noticeable spots began to appear on her face. The spots covered her face and she was diagnosed with Neurofibromatosis type 1 (NF1), a genetic condition that causes tumours to grow along your nerves.
While the tumours are of the non-cancerous kind, they may cause a range of symptoms such as; pale, coffee-coloured patches, clusters of freckles in uncommon places like the armpits, groin and under the breast, and problems with the bones, eyes and nervous system.
Her appearance meant that she was cruelly bullied by her peers during high school, so much that at the age of 13 she had enough and ‘wanted to die’. She has endured 20 surgeries including a debulk, face lift and facial reconstruction surgery.
She has since had three children who are now adults; Janina (31), Cohen (25) and Farrin (18). Cohen also has the condition, and they were also bullied about her condition. She has since decided to embrace her condition to teach her children how to love themselves.
“Tumours appeared and my face and grew, dragging down the right side of my face, eye and ear and the tumours started to appear on my body,” Christine said.
“I didn’t know or understand the full impact of bullying until I got to school, from the age of five I was bullied right through school and it continued even after that.
“I was called names like; fat face, rock muncher, rocky, freak, ugly and I was beaten with sticks, stones were thrown at me.
“I was pushed, kicked, pinched, had poo thrown at me and I was also locked in a cupboard at school by kids and vomited on.
“It also affected my children who received a lot of name-calling because of the way I looked. My youngest child was even told to go and kill herself. I would avoid photos after being told many times that I ruined photos.
“I managed to turn myself off when looking in a mirror, it’s actually quite hard to explain. My first operation was at the age of seven. I can still, until this day, hear the cries of children as they were lowered into salt baths to soak of bandages, while I was in the children’s ward.
“My operations continued right through my life; debulking the tumour which had invaded my face dragging it out of shape. I had little bone re-structure on the side of my face.
“I wanted to fit in, I wanted my kids to fit in, but society didn’t understand. They never asked or were afraid to talk to me in case they ‘caught’ what I had.
“I have always accepted what I could not physically change, however, it was society that made my life difficult through bullying to a point that at the age of thirteen I had enough and wanted to die.
“But the strength I gained from my upbringing helped me battle on; I never fought back physically or verbally. The abuse I received was pretty bad.
“I can forgive but I cannot forget although I have healed from that by talking openly about the effects of NF and bullying.
“As a child I turned to reading and Enid Blyton books, which became my saviour – I could take myself away to a world of make-believe and fantasy.
“You could become a fairy or an elf and, in her books, bullies always made friends with the kids they picked on. As I got older, I continued to ignore it the best I could.
“Telling someone would only make things worse and the friends I had were good but were only kids too. I was lucky enough to grow up in a cul-de-sac street and it was my safe area as was my home.”
NF1 is a condition you are born with and the level of the disorder can vary considerably from person to person.
NF1 is caused by a faulty gene; if the gene is faulty, it can result to tumours developing in the nervous systems. Out of half NF1 cases, the faulty gene is passed on from parent to child and only one parent needs to have the faulty gene for their child to be at risk of getting the condition.
Christine’s condition came from her grandmother on her mother’s side and it was passed on to Christine and her brother, who died of pneumonia and kidney failure when he was 23-years-old, as a result of NF1.
“I am married to my husband, Lee. We have been together since 1985 and have three adult children together – one of which has NF1,” Christine said.
“We are not really sure where NF in our family came from it can be traced only as far back as my grandmother on my mother’s side.
“My mother and her sister both had NF1. This was passed onto me and my younger brother who died at twenty-three.
“The hardest part was society and the bullying I received, as well as the physical and verbal and exclusion, which continued onto my three children who were bullied because of the way I looked.
“My son Cohen also has NF1 and just has recently been approved medical cannabis to help with the pain he gets. However, it is not funded by our government and we need to raise the money through a funding page to help him with this.
“I knew when we chose to have children that it was possible that we could pass on the gene, but we were prepared to face whatever came our way and my son who is now 25 does not hold this against me.
“I love myself for who I am and how I have grown up – to help others and advocate against bullying, I have done a number of talks here in New Zealand.
“My family love me for who I am and always have done, I have brought them up to accept people for themselves as beauty comes from within. I only have a few friends but not close. However, I now receive positive comments on how good I look.
“Remember we are not ‘NF’, we are a person with feelings. See the person first – you cannot catch it from us – understanding and asking is a big thing.
“People should not stare although we know it’s hard, but we are not alone; many others have NF and other health issues and conditions.
“We don’t have the right to judge a person on how they look in any way – think before you speak as words cut deep to our very souls.
“Be open – yes I know it is hard to open up, but sharing is the only way we can make people understand.
“I know it is hard to ignore the stares and the words which are negative, but you are you and a person with a heart and feelings. Stand strong and be a voice.”
Christine is trying to raise funds for her son, Cohen, to be able to buy legal medical Cannabis Oil to help ease his pain with NF by creating a Give A Little page: https://givealittle.co.nz/cause/medical-cannabis-for-cohen-brown