Nikkita was diagnosed with NF1 at seven years of age when her mum wanted to find out why she was struggling so much with school. A paediatrician diagnosed her based upon her café-au-lait marks and unusual freckling. Her learning difficulties were a good secondary indicator to confirm the diagnosis. It wasn’t until Nikkita was diagnosed that her mum also realised she had NF1, and now had a reason why she most likely struggled at school too.
Fast forward and Nikkita is now 30 and the faulty NF gene has been passed on to her two daughters, Charlotte and Sophia. Nikkita wants to raise community awareness of the complexities and anxiety associated with living with NF. She also thinks it is important for those with NF to be aware of their options when planning a family, such as IVF or prenatal testing. Your healthcare team and our Support Coordinators can provide information regarding these options and where to find out more. Reach out to our Support Team at email@example.com or call us for a confidential conversation on 02 9713 6111 Option 1.
Charlotte (left) and Sophia
The following story has been written by Nikkita:
Sitting in the office with the neurologist being told my youngest, Charlotte, has an optic pathway glioma, my heart drops. So many questions to ask but the main one seems to be “what do we do now”? I’m told another MRI is to be done within 3 months, then we will see from there. That night as she lay asleep with her big sister Sophia, I head straight to google doctor to research this. All I truly know at this point in time is that it’s a slow-growing tumour, that grows along the optic nerve.
So, then comes asking questions on the Children’s Tumour Foundation’s Facebook page. A couple of mums post that they seem positive in treatments out there as their daughters both have one; one mum said her daughter will most likely have treatment for life as it’s a hard place to operate. So much worry I have for Charlotte – for all kids going through this.
So, here I am with my 4-year-old who I love, and I worry about what the results will be after her next MRI in May. Is it growing slow, has it started to grow in a not so good place? So many questions and so much worry but only time will tell what the next road is she will be taken down – if any roads that is.
This condition, Neurofibromatosis Type 1 (NF1), has many more ways it can affect people. That’s why it’s important to bring it out of the shadows so everyone is able to know more about it, from how it affects different people, how age, religion, what county you're born, rich or poor, it won’t change how you’re affected – it might just change the treatment options you're able to receive.
So why bring it out of the shadows? So that everyone is able to receive the treatments that they need to manage this lifelong condition. So that we are less judged for having this condition, so more treatment options and trials become available to us. This might not affect you personally, but it might affect someone you know.
My two girls and I have this condition. They are my Heroes.
Charlotte (left) and Sophia
My eldest daughter, Sophia, is a spark of light; she lights up the room with the love she has, her determination, how she loves everyone and wants everyone to be her friend. It makes me smile and my heart sings with how proud I am that she sees past how someone looks. She is determined to do her best at everything she tries and she is beautiful on the inside and outside.
Charlotte has a bit going on – a feeding tube and Eosinophilic oesophagitis that are not related to NF, global development delay that affects her speech and motor skills, which means I may hold her back from starting school....it’s only just recently that I found out that she has this optic pathway glioma. This is a condition that does not have a pause button, an off switch or reset. Those of us that have NF live with it every day, we work, we have fun, we party. In fact, the best party happens to raise money for NF. It happens around Valentine’s Day each year and it’s called the Cupid’s Undie Run. Have you heard of it? Have you been? If not, you should check it out. We strip down to our undies to raise money and go for a run, then we have a party. After all, we shine a light, we bring those with NF of all ages together to celebrate and say we are here for you, we are your support team, we are your army, so come and be a part of the Children’s Tumour Foundation penguin army.
For one of the most common genetic disorders, it’s not well known, but it can be hard to know a condition that affects everyone in a different way.
Bringing NF out of the shadows helps us to feel a part of society, to be seen, heard, accepted, valid.
Neurofibromatosis is hard to say but harder to live with.