Zoe and I used to work together some years ago. We shared an office pod – two separate desks in one screened off cubicle area. We did quite a bit of talking over that time, got to know one another and shared quite a few of life’s ups and downs.
Fast forward several years and we find each other on Facebook and I am overjoyed to hear about the birth of both her boys and then her beautiful little girl Emme, and of course to see all the photo’s that she shared.
You can imagine my devastation when scrolling my Facebook feed one day to see a post from Zoe advising of her beautiful Emme’s diagnosis. In February 2015, Zoe and her husband’s beautiful baby girl was diagnosed, at the age of 9 weeks, with a condition called Neurofibromatosis type 1, or NF1. NF is an unpredictable disorder, causing tumours to form in the brain, spine, optic nerves, and virtually anywhere in the body. It causes deafness, blindness, bone problems, cancer and learning difficulties. It can result in numerous surgeries, chemotherapy and amputations, and it is incurable. NF can be mild or severe and there is no way of knowing which child will be affected in which ways.
Can you imagine the impact this disease has on a family? In Zoe’s words: “The loss of the simple joy that comes from having a baby, the loss of hope for a bright and healthy future for your child. Whether Emme is ‘mildly’ or severely affected, or whether she loses her battle altogether, we will never be the same people again – the grief sits heavily on me as her Mummy every day, and the worry never disappears. She stumbles and we watch more closely for the next fall that may indicate a brain or spinal tumour, she cries and we wonder if she’s in pain from tumours along the nerves, her nose bleeds and we pray it’s not the high blood pressure they’ve told us could cause her to have a stroke at any moment. It’s soul-destroying and we have no way of knowing what her journey will be or how long it will be.”
The hope for treatment options and for a cure for her daughter and others like her is Zoe’s driver. It’s the reason she keeps going and keeps fighting. She works closely with the Children’s Tumour Foundation (CTF) and is Chair of the Queensland Committee for CTF. She’s also Race Director for Brisbane Cupids.
Little petite Emme recently turned two (2) years of age. You can read more of Zoe and Emme’s story HERE. It was written in May 2016.
You can also read HERE about Lyla, another little girl with NF1.
Zoe and other parents of children with NF need some help and support.
Through CUPIDS UNDIE RUNS in 14 cities across Australia on 19 February 2017 (Valentine’s Day weekend), they are hoping to achieve funding for better treatment options and lifesaving trials. Every day they are one step closer to a cure for NF and how soon that happens depends on funding for research to continue. Here is the link to Cupids around Australia: http://www.cupidsundierun.com.au/
On a personal level Zoe, her husband and family hope that with further funding they could have access to the care Emme needs here in Queensland rather than cross their fingers and hope that an out of state clinic might take her, or having to uproot their family by moving south. If you live in Brisbane you could join Zoe’s Cupids Undie Run Team – ‘EMME’S CUPIDS’ – or no matter where you live you could donate and/or share the link. Here’s the link to Emme’s Cupids: https://cupidsundierun2017.everydayhero.com/au/the-brisbane-cupids
At the moment they are $919.45 away from their target of $5,000. I would like to see them exceed the $5,000.
Please consider helping out in order to give these parents and children some hope for a brighter future. Every little bit of help adds up to make a big difference.
You can find further information on Neurofibromatosis on the Children’s Tumour Foundation’s webpage HERE.
Ciao for now,
Linking up with Kylie Purtell for #IBOT