Dialog Box

Children's Tumour Foundation of Australia

Maddy's Story

Hi! My name is Maddy, I live in regional Western Australia and for my whole life, I have been different.

Mum and Dad remember our introduction to NF like it was yesterday. The eye doctor said, “have you ever heard of Neurofibromatosis?” 

He wrote the word down on a piece of paper and followed it with, “don’t Google it”.

We were seeing the eye doctor because my eyes hadn’t straightened up after I was born. The doctor noticed that I seemed to have a big head for my body and then asked Mum if I had ‘spots’. It’s amazing that he put all those things together like that. Mum had asked the GP about my ‘spots’ previously and he had said they were just sunspots. Mum questioned how I could have a sunspot underneath my arm. So, it was pretty scary to find out these spots were an indicator of something much more serious.

Mum doesn't get angry when she tells me about the misdiagnosis or how worried she was. She says, "Not all doctors and nurses know about NF and so we get to help educate them" - we have had to tell them about it plenty of times. I have been to the hospital many times when student doctors, or specialists want to meet me just because I have NF and not many of them have seen NF in person before.

My first MRI confirmed that I have an optic glioma (a thick nerve between my eye and brain) which causes my eye problems. The paediatrician gave me a definite diagnosis of Neurofibromatosis Type 1 when I was about 18 months old. No one else in my family has it. So, it was then that my family knew I was different. 

They taught me that different is awesome and that I am perfect just the way I am- which I think is pretty special and despite having NF I feel really lucky to have such supportive parents."

I had surgery to straighten my eyes and surgery for grommets and adenoids when I was really little. It was urgent that I had grommets put in; I wasn’t talking because I couldn’t hear properly.

We all went to Perth to see the Ear Nose and Throat specialist and we ended up staying a week because he said he would do the surgery the following day. We had to stay in Perth afterwards in case of bleeding into the airway. Mum said it was funny because none of us had any clothes, but it was a good excuse to go shopping. She always helps me find the positive in every situation.

I walked and talked later than other kids and I still find school hard. I get C and D grades in school with an occasional B. My reports always comment on my happy and helpful personality. I am proud of this, because I think being a good person is far more important than any grade. Besides, I know that it is my NF that makes me learn differently to other kids my age."

I have had a paediatrician, speech therapist, audiologist (hearing tester), speech pathologist, foot specialist, eating therapist, physiotherapist, occupational therapist, orthopaedic surgeon, educational psychologist, allergy specialist, and neurologist. I love counting the number of people on my health team and I reckon Mum has forgotten a few. 

We were lucky that we knew about NF so early in my life because Mum and Dad could arrange all these things to help make me strong.

I don’t see all these specialists anymore because I am 13 and I don’t need them now. I see the neurologist every 3 months during puberty because this is a time that tumours can grow.

I have a tumour in the centre of my brain that started to grow but it has stopped growing for now (fingers crossed).

I try not to think about it or worry about it, because worrying doesn't achieve anything. NF is all I have ever known so I have just adapted to it.

I don’t really like missing school for appointments. One year my school gave out certificates for attendance and I didn’t get one. I spoke to the principal about it because I didn’t think it was fair to kids who attend every day except for appointments or hospital. I think people need to be more understanding of kids who have genetic disorders or illnesses and it is important to treat everyone based on their individual abilities and circumstances.

My Mum said that her most stressful time was when I broke my leg during a camping trip. We were flown by Flying Doctor and stayed in a Perth hospital with me in traction for six weeks. She also didn’t like waiting for MRI appointments in the early days and watching me be put under anaesthetic for surgeries and MRIs was really hard on her.  It was definitely hard on my parents because they never knew what to expect or how NF would affect me.  Fortunately, I haven’t needed anaesthetic for an MRI for a while now and I go in by myself. There are movies in the MRI machine, and I am an absolute boss at having the injection for the contrast.

I definitely think us kids with NF are NF Heroes. I think I am brave, and I am always proud of how I handle all of the tests and doctors' appointments.

I think my favourite thing about having NF, is that it has opened me up to so many incredible opportunities. I have participated in Riding for the Disabled, Cupid's Undie Run and I actually have fun in the Children's Hospitals.

When I was talking to my mum about having NF she said that she doesn't mind NF, because it makes you appreciate what you have and makes you realise how strong you can be in the face of adversity. It has shown our family how kind people can be and how much the people around us care, especially when they send letters and gifts and visit us in hospital."

It makes us feel so loved and proud when they donate and participate in the Cupid's Undie Run here in Bunbury, because they are helping us improve awareness...and for us, that is very important. Mum also said we have met other families through the NF community, that we wouldn’t have met otherwise and some of these people are her closest friends.

No one has ever been mean to my face because of my diagnosis, although Mum said she heard some girls saying they didn’t want me on their netball team which hurt her more than me. But then we decided that we don't really care what mean people think anyway.  Generally, I see the best in people. I came last in the school cross country and the whole school was cheering for me when I finished.

There is more to life than winning races and as long as you always try your best and treat people with kindness, I think you are doing okay!