"the more people that know, the easier my life will be..."
Written by Hilda Maroun (Highest National Fundraiser for the 2019 NF Hero Challenge and Mum to NF Hero, Bianca)
I'm a very private person. I hurt in private and I keep things to myself. That makes it all easier. Right?
When my daughter Bianca was diagnosed with NF at age 4, our world was turned upside down. Within weeks she was on chemotherapy to save her vision and the only people that knew about what we were dealing with were our immediate family and a couple of close friends.
In my mind, I was questioning how I could possibly explain to people what was happening with my child when I didn’t even understand it. I thought with a little time I would be able to talk and let people in, but weeks turned in to months and months turned into years. Seven years to be exact!
During that time Bianca had chemotherapy twice, age 4, and again at 10 years old.
Somehow it felt easier to act like everything was fine than to say out loud that my child had NF. I was scared people would treat us differently; I was scared something negative would be said in front of Bianca. I just wanted to protect and keep her safe from the world. Maybe I was being selfish? Maybe I was scared people might ask questions, I couldn’t answer and talk behind my back? Maybe I was scared to put this out into the world, because it would make it ‘real’ that my child had NF and I had no control over it.
When I first received the email about the NF Hero Challenge in 2019, I dismissed it. Then a second email came through and I thought, “What could I do? Can’t do much if no one knows my child has NF”. Then the third email popped up and I thought to myself, “Here’s my chance to make a difference”. I knew if we took part in this, that our secret world of NF would be all over social media. We spoke to Bianca and her response was “the more people know, the easier my life will be.”
Wow! Why didn’t I ever think of it in that way? She was 11 years old and saw the world in a very different way to me. This was my light bulb moment; I knew what I had to do.
Telling our story was a very positive experience. I thought we would be bombarded with questions, but instead, I received beautiful messages of support and well wishes. Everyone was behind us in our fight to help Bianca on her journey with NF.
As a family, we decided to jump into Brighton Bay in the dead of winter to raise money and support our daughter. I describe the experience of jumping into the freezing water in much the same way I remember feeling when Bianca got diagnosed with NF.
My toes were the first thing to hit that freezing water and my brain was trying to comprehend what was about to happen, then all of a sudden, I just felt numb.
I was struggling to come back up out of the water. Kicking so hard but it felt like I wasn’t moving. I felt trapped, not knowing which way was up.
When I finally popped up and gasped for air, the sound of everyone cheering made me realise I wasn’t alone in this struggle and neither was Bianca. It was an awakening. No matter what NF would have in store for her, I now knew she would be loved and supported on her journey.
We have not found a cure for NF, but by doing our little part to help raise awareness and educate people feels amazing. My advice to others would be “to never feel like you have to do this alone. Reach out and share your story because you never know who’s also struggling in silence”.
I wanted to do the Hero Challenge to help support my child. I now know I needed this more than she did. I needed it so that I could start to heal. After seven years of feeling helpless and having no control. Taking part in the NF Hero Challenge was so satisfying and most of all I felt liberated.
JOIN THE 2020 NF HERO CHALLENGE READ BIANCA'S STORY