Help Support Jess's Battle
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Hi, my name is Jess Lawrence I am 21, living with a rare genetic disorder, known as neurofibromatosis type 2 (NF2), causing dozens of tumours growing in my brain, spinal cord, under the skin and the nerves throughout my body. The grim discovery of this diagnosis in 2014 was totally unexpected after results from a routine MRI scan, to confirm my diagnosis of narcolepsy (that causes me to sleep all the time without medication) revealed a dire reality for me at 14 years of age. Two unmistakable tumours occupied either side of my brain stem, proven to be markers of the exceedingly rare genetic disorder NF2.
Before I could even begin to process the severity and urgency of my situation, I was surrounded by doctors and specialists, outlining the urgency for a spinal operation to remove a tumour that threatened to paralyse me. It was the first time I had to relearn how to walk, eat and drink and it wouldn’t be the last.
Before the year ended, I got a taste of the kind of hospital environment I’d become very familiar, celebrating my 15th birthday with some lemonade in emergency with mum. I experienced a lot of firsts back then, a lot of them too confronting for a teenager to process. NF2 is such a complex condition and affects me in a multitude of ways.
I am extremely fortunate to have a great group of medical specialists who help me with the treatment and rehabilitation of the ever-growing tumours, my stroke & narcolepsy. This support includes neurologists, neurosurgeons, oncologists, sleep specialists, reproductive endocrinologists, audiologists, ophthalmologists, ENT specialists & radiologists.
With this medical support I was able to complete my HSC and pursue my interest and passion for marketing by getting into Macquarie University in 2018. I am now studying part-time in between my treatments and rehab.
2018 was both one of the best and worst years of my life, both new and exciting as I began my degree at uni and immersed myself into it, as well as traumatic and crippling as medical concerns took over my life. During a major operation to remove a large tumour pressing on my brain stem, I had a severe stroke which followed by complication after complication, lengthened a 2 week hospital recovery to over 4 months. Due to my narcolepsy I’m a very vivid dreamer and what I recall as an endless series of dreams, my family recall as 8 days by my hospital bed, helpless as I lay in an induced coma with severe swelling of my brain.
I was completely oblivious to the fact I would not be resuming life as I knew it, attending uni, spending time with the new friends I’d made, being social and just enjoying being a young and experiencing new things. Loosing most of my hearing, decreased sight and relearning how to walk makes the little things challenging.
The most difficult and isolating hardship I’ve had to face is my hearing loss. Partial or complete deafness is almost a guarantee with NF2 patients. As an avid listener to many things including music, podcasts, taking part in conversations, watching tv, the rate at which my remaining hearing decreases is scary.
I love music and it’s very hard to dismiss it, when my favourite songs sound so different and I have trouble hearing the words, this makes preserving my remaining hearing one of my key priorities.
As you can imagine after all my medical procedures, months & months in hospitals and weekly visits to my specialists, MRI scans, rehab and other treatments have resulted in considerable medical costs that are all ongoing. With the increased rate of tumour growth, in particular a large tumour threatening my remaining hearing & pressure on my brain stem, we’ve decided to try and stabilise tumour growth using a Chemo drug normally used for aggressive brain cancer, called Avastin.
This chemo drug is my best hope until one day a miracle treatment is found. It costs $50,000 a year for us because it is not covered by medicare and I will be on it for many years if it helps.
To say the diagnosis has taken a toll on myself and my family is an understatement. And I say ‘we’ because my family and I are in all of this together. Operations, complications, a stroke, rehabilitation, and ongoing treatment, they will drop everything for me in an instant and I can’t express how grateful and lucky I am to have them and such a wonderful support network.
Despite all this, I haven’t lost my motivation to get on with things. I am a student juggling my studies with everything else. I savour being a young person integrating myself back into society which has proven itself difficult but I’m trying.
To help deal with the magnitude of my medical debts, ongoing treatments and the cost of the Avastin, I am trying to raise enough money so I can live as normally as possible. It's thanks to your help, my goals of leading a normal life don't seem so distant anymore and for that I am so grateful.
Jess
A trust fund has been set up for me with an independent trustee
Before I could even begin to process the severity and urgency of my situation, I was surrounded by doctors and specialists, outlining the urgency for a spinal operation to remove a tumour that threatened to paralyse me. It was the first time I had to relearn how to walk, eat and drink and it wouldn’t be the last.
Before the year ended, I got a taste of the kind of hospital environment I’d become very familiar, celebrating my 15th birthday with some lemonade in emergency with mum. I experienced a lot of firsts back then, a lot of them too confronting for a teenager to process. NF2 is such a complex condition and affects me in a multitude of ways.
I am extremely fortunate to have a great group of medical specialists who help me with the treatment and rehabilitation of the ever-growing tumours, my stroke & narcolepsy. This support includes neurologists, neurosurgeons, oncologists, sleep specialists, reproductive endocrinologists, audiologists, ophthalmologists, ENT specialists & radiologists.
With this medical support I was able to complete my HSC and pursue my interest and passion for marketing by getting into Macquarie University in 2018. I am now studying part-time in between my treatments and rehab.
2018 was both one of the best and worst years of my life, both new and exciting as I began my degree at uni and immersed myself into it, as well as traumatic and crippling as medical concerns took over my life. During a major operation to remove a large tumour pressing on my brain stem, I had a severe stroke which followed by complication after complication, lengthened a 2 week hospital recovery to over 4 months. Due to my narcolepsy I’m a very vivid dreamer and what I recall as an endless series of dreams, my family recall as 8 days by my hospital bed, helpless as I lay in an induced coma with severe swelling of my brain.
I was completely oblivious to the fact I would not be resuming life as I knew it, attending uni, spending time with the new friends I’d made, being social and just enjoying being a young and experiencing new things. Loosing most of my hearing, decreased sight and relearning how to walk makes the little things challenging.
The most difficult and isolating hardship I’ve had to face is my hearing loss. Partial or complete deafness is almost a guarantee with NF2 patients. As an avid listener to many things including music, podcasts, taking part in conversations, watching tv, the rate at which my remaining hearing decreases is scary.
I love music and it’s very hard to dismiss it, when my favourite songs sound so different and I have trouble hearing the words, this makes preserving my remaining hearing one of my key priorities.
As you can imagine after all my medical procedures, months & months in hospitals and weekly visits to my specialists, MRI scans, rehab and other treatments have resulted in considerable medical costs that are all ongoing. With the increased rate of tumour growth, in particular a large tumour threatening my remaining hearing & pressure on my brain stem, we’ve decided to try and stabilise tumour growth using a Chemo drug normally used for aggressive brain cancer, called Avastin.
This chemo drug is my best hope until one day a miracle treatment is found. It costs $50,000 a year for us because it is not covered by medicare and I will be on it for many years if it helps.
To say the diagnosis has taken a toll on myself and my family is an understatement. And I say ‘we’ because my family and I are in all of this together. Operations, complications, a stroke, rehabilitation, and ongoing treatment, they will drop everything for me in an instant and I can’t express how grateful and lucky I am to have them and such a wonderful support network.
Despite all this, I haven’t lost my motivation to get on with things. I am a student juggling my studies with everything else. I savour being a young person integrating myself back into society which has proven itself difficult but I’m trying.
To help deal with the magnitude of my medical debts, ongoing treatments and the cost of the Avastin, I am trying to raise enough money so I can live as normally as possible. It's thanks to your help, my goals of leading a normal life don't seem so distant anymore and for that I am so grateful.
Jess
A trust fund has been set up for me with an independent trustee
Organizer and beneficiary
Jessica Lawrence
Organizer
Mosman NSW
Jessica Lawrence
Beneficiary
