NF2 is a rare genetic disorder affecting 1 in 40,000 people. It is characterised by tumours of the nerves that transmit balance and sound impulses from the inner ears to the brain (bilateral acoustic neuromas/vestibular schwannomas), as well as brain and spinal tumours.
Libby’s NF2 journey began when she was 4 years old. What should have been a simple optometrist appointment for a lazy eye became a diagnosis of NF2 and a brain tumour.
It was 2015, Libby and her family lived in the Northern Territory. Shortly after her MRI, they were flown to the Children’s Hospital at Westmead as it was clear she would require specialist care that was not available in Darwin. The travel scheme in Australia caters for one carer and the patient, which meant that Libby’s mum, Jen, had to travel alone with Libby across the country to face the unknown.
This is the trip that changed their lives, forever.
Libby and her mum met with several specialists at Westmead and learnt that Libby had not one, but four brain tumours (two being on the hearing nerves). Within just one week of her first MRI, and at only four years of age, Libby was scheduled to have brain surgery. One of the tumours in her brain was causing her eye to push through the socket.
It turned out, the emotional scars were worse than the physical for Libby. The surgery required the Neurosurgeon to shave part of Libby’s head, and left her with a large scar that started near her ear and went across half of her skull. Libby became withdrawn, she hated looking at herself in the mirror, and couldn’t control her emotions.
One of the hardest parts of being a parent, was watching our once outgoing, bubbly girl become inherently sad. Libby was so sad, that she no longer wanted to go to places that she had previously loved, like the park, out of fear of being judged by other people for how she looked."
Libby would say that she looked like a monster and thought that everyone would run away screaming if they saw her. Soon after, they started counselling to help heal the emotional wounds from the surgical trauma.
In October 2016 specialists discovered that Libby had a new tumour which wasn’t present during her previous MRI. Within eight months, a tumour had grown in her spinal cord at the craniocervical junction – located at the very top of her spinal cord and brain stem.
This tumour could be life-threatening and there are no effective medical treatments for NF related spinal tumours.
Libby’s parents learnt that surgery would only go ahead if she became symptomatic, as the risk of the surgery is potential paralysis or death. This is when Libby’s parents realised that there would be no magical solution or treatment for Libby. Her family were forced to relocate to Sydney in order to have access to specialist medical care.
In 2017, Libby was given the chance to be in a video about NF for the Children’s Tumour Foundation.
It was an opportunity to meet other kids who were just like her and they even played it at her school. This experience made Libby shine; her confidence came back and she relished being a ‘celebrity’.
Since then, Libby has featured in many videos for the CTF and has had the opportunity to meet Ambassadors and appear on national television, where her family discussed NF and Cupid’s Undie Run on Today Extra.
Every year, Libby has faced another setback. In 2018 she required spinal surgery to remove an egg sized tumour from the lumbar region of her spine. They were warned about possible paralysis, weakness and other complications, however they had no option other than to proceed and accept the risks as Libby was in immense pain. Remarkably, Libby was the perfect patient and bounced back from her spinal surgery with nothing more than a new scar and a story.
2019 appeared to offer Libby a reprieve from NF tumour blows. Early in 2020, Libby had her routine MRI- something children with NF need to monitor their tumours. Her family had hoped that her tumours had remained stable and that they would be able to push her MRI’s from 9 monthly, to yearly. Unfortunately, this was not the case.
This year, Libby’s parents learnt that the tumour near her brainstem was infiltrating more nerves than originally realized. This means that if the tumour decides to grow, surgery would not be able to remove the whole tumour. There is now no medical treatment available to Libby for her most dangerous and unstable tumour. Rather than extending the MRI time, Libby’s MRI schedule has been brought forward.
The “watch and wait” process of NF related tumours is one that terrifies Libby’s parents, as they fight to continue to create normal childhood memories and experiences for their girls.
Devastatingly, Jen and Cam had only just come to terms with the new reality surrounding Libby’s spinal tumour, when they were dealt another blow. Libby now has a tumour on the retina of her left eye. According to her dad, “This wouldn’t be a major issue, except she cannot really see out of her right eye after her brain surgery several years ago. So, this new tumour, is on her good eye and after a 5-hour long opthamology appointment, the specialists could not tell us what it is, or what could happen. Now, we are “watching and waiting” that lesion as well”. It has been a constant series of medical setbacks for Libby.”
We are so tired of constantly being on edge. We know that it is likely that at every appointment we will be told that things are changing or worsening, but there is nothing we can do about it, except to “watch and wait. There is no treatment. There is no cure. We are essentially just watching and waiting for bad things to happen."
An important part of Libby’s NF journey, that her parents want to start a conversation about, is the impact an NF diagnosis has on siblings. Libby’s younger sister now has a fear of hospitals and of her sister dying. She has now begun seeing a psychologist, but for her parents, they know her fears are justifiable. As parents, Cam and Jen crave normality but continue to fundraise and share their experiences in order to help families like theirs and to help children like Libby, find a better “normal”.
While there is no cure for NF2, we wouldn’t change Libby for the world. This girl has taught people so much about NF, acceptance and given people a whole new outlook on their own lives. She has followers all over the world. We will continue to fight for a cure, so no other family has to go through what we are."
In the meantime, Libby continues to light up the room with her infectious smile and zany personality. She loves to read, loves art and to play with her dog Luna. She inspires the community with her strength and positivity and will continue to fight alongside her parents for a cure for NF, while growing her collection of Beyblades, Pokémon and all things Ravenclaw.
