2018 Tax Appeal
In June 2015, our world was turned completely upside down...
There is a lot to be said for parental instincts, when you know something is just not right. At worst, we suspected our daughter Elizabeth had a lazy eye… We could never have predicted the anguish and torment we were about to face or how a diagnosis of Neurofibromatosis Type 2 (NF2) could break our hearts and change the course of our lives forever.
Our journey with NF2 began with referrals to optometrists and ophthalmologists over our daughter’s eye. Professionals couldn’t say what was causing her pupil to turn or her eye to bulge. One moment we were at a simple optometrist appointment, the next we were needing an MRI. That seemed extreme until the results showed that our Libby had a brain tumour. No parent should ever have to hear the word “tumour” in a sentence about their child.
We had been living in Darwin but due to a lack of specialist care were advised to travel immediately to The Children’s Hospital at Westmead in Sydney. Leaving the rest of our family behind, Libby and I travelled to meet with several specialists based there. Suddenly I was being told that she had four brain tumours and several spinal tumours. Then there were the horrifying facts about NF2, which affects only one in 40,000 births. We barely had a chance to digest our new reality as Libby required surgery right away. One of her brain tumours was causing her eye to push through its socket. Within one week of her first MRI, at just four years old, Libby was scheduled to have brain surgery. My baby had just started pre-school. How was this happening? How had I never heard of NF2?
After the surgery, Libby became withdrawn. At four years old, my beautiful daughter hated looking at herself in the mirror and couldn’t control her emotions. It broke our hearts to watch our once outgoing, bubbly girl become afraid of even being seen. She didn’t want to go to the park because she was convinced people would think she looked like a monster. It turned out that the emotional scars of NF2 were as painful as the physical.
Libby now has regular MRIs. Recently, we discovered that a tumour had grown in her spinal cord at the craniocervical junction (the very top of her spinal cord and brain stem). This tumour is life-threatening. There are no effective treatments for it and, due to its position, finding a neurosurgeon to operate is difficult.
We are now weighing up quality vs. quantity of life. NF2 has robbed our family of so much. We’ve had to move across the country just to have access to specialist care. We live in constant fear that every stumble or fall is caused by her tumours. As parents, we often discuss if and how to tell Libby what is happening inside her tiny body. One day she may lose her ability to hear, walk, run, jump and play. Like most eight-year-olds, Libby has big dreams. How do you tell your child that none of them may be possible?
Currently there is no cure for NF1 or NF2 but our family needs to believe that one may be possible. We will continue to fight alongside the Children’s Tumour Foundation to provide better treatment options and one day conquer NF so that another family doesn’t have to experience the unrelenting and unpredictable hell that we endure.
Your support can help those affected by NF1 and NF2, like Elizabeth and her family.
Make a tax deductible donation today to help us #CONQUERNF and make a difference!
Elizabeth and Jen’s story is unfortunately just one of many we hear at the Children’s Tumour Foundation, the only not-for-profit in Australia nationally focused on making a difference in the lives of those affected by Neurofibromatosis (NF).
NF is one of the most common genetic conditions in Australia affecting 1 in 2,500 people with limited treatment options and no cure. It is our mission to support families like Elizabeth’s through: specialist clinics, family camps, support groups, information seminars and Australian NF conferences for medical professionals.
At the beginning of 2018, we were proud to unveil a new multidisciplinary NF Clinic in Sydney, the NF Centre for Translational Research, which will specialise in the treatment of complex medical problems related to NF and serve as a hub for NSW Health. This will assist in ensuring a better diagnosis and advanced care for NF sufferers across NSW. Without federal government funding, we largely rely on the generosity of our community to help achieve our goals.
We are currently committed to raising $90,000 to dedicate towards further medical research and support services. We want to see specialist clinics in every state of Australia, so that families like Elizabeth’s won’t need to move away from home just to access specialist care, and improve national awareness about a condition that is so misunderstood.
Families living with a diagnosis of NF have very limited treatment options. There’s no way of predicting how it will manifest itself next and affect their quality of life. Imagine living with such fear and uncertainty surrounding the health of a loved one. The Children’s Tumour Foundation is determined to investigate, deliver better treatment options and ultimately find a cure for this debilitating condition… But we can only do this with your help, so please donate today.
Thank you for your support.
CEO – Children’s Tumour Foundation
Donations of $2 and over are tax deductible. To make a donation over to phone, please call 02 9713 6111.