Dialog Box

Meet William

Will was diagnosed with Neurofibromatosis Type 1 (NF1) based on a number of Café-Au-Lait spots (birth marks) at just 6 months old.  

His Mum Amy remembers reading about NF and all of the possible tumours her son could experience over his life span, and the list seemed never ending.  

When Amy met with a Neurologist, they discussed NF in detail.  Amy remembers the appointment vividly, mostly because when she was asked if she had any questions, she focused on whether Will would develop ADHD. She clearly recalls the look on the doctor's face when she did, and says, “They were confused as to why I would be worried about his behaviour when he could potentially go blind, experience brain tumours, spinal tumours or even cancer".

For Amy, it was easier to focus on a condition or an element of NF that she understood, rather than the possibility that her first born child could develop tumours anywhere in his body, at any time.  

Amy thinks that parents of children with NF must live in a state of 'denial and hope' to be able to put one foot in front of another.  

The reality is that there is no way to predict how NF will affect your child, or when. She hoped that her son would only experience a mild range of symptoms and convinced herself that this will be his reality...  

Unfortunately, Will was diagnosed with an optic nerve glioma; a tumour in his brain that causes a deterioration in vision. 

Treatment for optic gliomas is usually chemotherapy. They are not at this stage yet, but he must now have MRI's every six months to monitor its growth. 

On top of his brain tumour, William also has scoliosis and requires physiotherapy to assist with muscle weakness and hypermobile joints. William has a range of therapies and interventions to assist with his development, including speech and OT as he struggles with speech sounds and fine motor skills.  

Amy is happy to live in her "denial and hope" bubble, choosing to believe that Will's tumour will be his ONLY tumour and that it will remain stable. 

To cope with his condition, she has chosen to show him as much of the world as she can; having as many adventures as possible, to show him see how big and diverse the world is.  

We tell him that he can do anything he puts his mind to, teach him to be kind and to accept the things he cannot change. We show him the importance of taking care of friends and family. We know that a boy with a heart this big is capable of rising to any challenge and we intend to face this one head on."