Jasmine was diagnosed with NF as an infant, based on her family history and the prevalence of multiple café au lait birthmarks. She was a happy and healthy child and knew no different, other than the fact she had spots.
Jasmine went to school, had lots of friends and didn’t allow NF to define her. Life took a drastic turn for Jasmine when she was eleven years old.
Jasmine started experiencing severe and frequent headaches and her parents knew something was not quite right.
Specialists at the Royal Children’s Hospital immediately booked her for her first MRI of her brain and spine.
Heading back to the GP to receive the results is a day I will never forget."
Jasmine was a young high school student, with the world at her feet. In a moment she went from knowing she had NF, to all of a sudden, sitting with her parents in a doctor’s surgery listening to an extensive list of health complications that were unveiled by her MRI.
The doctor explained that Jasmine had scoliosis, two small tumours in her lumbar spine and much to her family’s shock, she also had an optic pathway glioma in the middle of her optic nerves that was also causing red and green colour blindness.
Jasmine was told that she had to start chemotherapy immediately.
For one year, Jasmine’s family drove for two hours every 28 days so that she could receive chemotherapy at the Royal Children’s Hospital. Jasmine received twelve rounds of chemotherapy, which fortunately stabilised her optic nerve glioma. This gave Jasmine a three-year reprieve from NF tumour symptoms and enabled her to enjoy life as a teenager and discover music, photography and develop a life outside of chemotherapy, hair loss and sickness.
Living with NF is like the ocean; it is sometimes calm and at other times it can be dark, furious and rocky."
At fourteen years old, Jasmine’s routine MRI showed an astrocytoma (brain tumour) had developed at the back of her brain, within the parietal lobe. Initially, this showed up as a “speck” on her scans, but sadly it doubled in size over just six months.
In 2015, Jasmine had her first brain surgery to remove an aggressive brain tumour.
Jasmine recovered from her brain surgery and returned to life as normal.
A year after her surgery, NF reared its ugly head again and sent a tidal wave of new, life-altering symptoms Jasmine’s way.
Jasmine began to experience seizures that progressively worsened. Despite being put on epilepsy medication, Jasmine would have over thirty seizures a month. After four years of being unable to control the epilepsy symptoms, which included failed medications, numerous EEG’s and horrific seizures, Jasmine was diagnosed with temporal lobe epilepsy and it was discovered that she had been having focal onset seizures.
After several anti-epileptics failing to control her seizures, Jasmine’s specialists had no choice but to recommend a temporal lobectomy. This was the only option to improve Jasmine’s quality of life.
In 2019 Jasmine had her second brain surgery. A neurosurgeon removed the entire right temporal lobe of her brain and resected her hippocampus and amygdala.
Recovery was brutal and yet, Jasmine remained positive and steadfast in her determination to live life and not let NF define her. To this day, Jasmine is seizure-free!
Jasmine’s test results came back and it was discovered that NF1 had caused cortical dysplasia- which means the top layer of her brain and the neurons didn’t form properly. This is one of the most common causes of epilepsy.
If a temporal lobectomy wasn’t traumatic enough, Jasmine is now 20 years old and has been diagnosed with another brain tumour.
A lesion that was being monitored since 2016, significantly changed in size and density and was declared a DNET brain tumour. She is now on the waiting list to have her third brain surgery.
Surprisingly, Jasmine is taking it like a champ and in response to being told she would need another brain surgery, she said to the doctor, “that’s ok. I am a pro at this, it’s only my third. This is nothing”. The doctor laughed and they declared Jasmine a “seasoned pro”.
Despite a difficult NF1 journey, Jasmine finished high school and is now studying the course of her childhood dreams at university. Jasmine is majoring in Journalism and studying a Bachelor of Media and Communications.
She is an inspiration to many and a beautiful, gentle soul, who loves to make others smile.
Her other dream is to one day go to schools and communities and be a spokesperson for NF. Through studying her course, Jasmine was approached and happily allowed us, the CTF, to give her the opportunity to become an intern for our foundation.
She hopes to educate the broader community about Neurofibromatosis in the hope that further understanding and research will one day lead to a cure.
Jasmine was over the moon to join the Children's Tumour Foundation team at the end of 2020 as it was another step closer to educating others, voicing her story, experiences and providing a personal insight into what living with NF is really like.