Macy was diagnosed with Neurofibromatosis (NF) at 18 months old, she had twelve birthmarks and wasn’t walking due to low muscle tone. Her mum, Suzannah, was told not to Google NF, because it can be confronting and 99% of the possible symptoms would not happen to Macy…. Sadly this was not the case and her family could never have predicted how NF would tear their lives apart.
On her 3rd birthday Macy broke her arm and when the cast came off, her mum noticed that she hadn’t started to use it again. Macy was referred to an orthopaedic surgeon who suggested that her gross motor development could be signs of Cerebal Palsy. Suzannah was shocked, how does a healthy three year old go from a broken arm, to having Cerebral Palsy? Something didn’t feel right. Things became progressively worse, Macy began to fall asleep in random places throughout their family home and Suzannah’s motherly instincts suggested that something was ‘not right’.
Macy’s mum rushed her to the pediatrician and demanded someone examine her daughter. The next thing she knew, an “urgent MRI for a suspected tumour”, was organized for the next morning. Suddenly the frightening seriousness and reality of Neurofibromatosis became all too real. It took one week for Macy to be diagnosed with multiple Pilocytic Astrocytoma’s (brain tumours). At just three years of age, little Macy had lost partial mobility down the left side of her body and was scheduled for brain surgery. Unfortunately the surgery did not go as well as had hoped, one tumour in particular could not be completely removed, due to the risk of blindness and paralysis.
And so, Macy’s chemotherapy journey began. Macy’s family were terrified. For TWO YEARS Macy received chemotherapy and had MRI’s every 6 weeks. During a break from chemo, Macy had her annual opthamology checkup, devastatingly, it was discovered that her vision had rapidly declined and in 2014, she was diagnosed ‘legally blind’. This decline in vision meant that Macy’s tumours were no longer stable and after four years of chemotherapy, they were refusing to respond to treatment. Fortunately, Macy was included in a clinical trial at the Royal Children’s Hospital in Melbourne which was completed on March 5 of 2018. Today Macy’s tumours are finally stable, after a long and torturous treatment cycle lasting SIX YEARS. The clinical trial was Macy’s last treatment option, she is due back for follow up and her mother fears, if her “tumours are no longer stable, where do we go from here?” Effective treatment options for NF related tumours are limited and there is NO CURE. According to Macy’s family, “Superheroes don’t always wear capes, but this one truly deserves one”. So much of Macy’s childhood was taken from her because of Neurofibromatosis…but Macy’s family are still hopeful and are still fighting! Suzannah is a volunteer Race Director for the Children’s Tumour Foundation and is bringing Cupid’s Undie Run to Hobart in 2019 to ensure she can improve awareness for this horrific genetic condition and make a difference for her beautiful daughter.