Dialog Box

Children's Tumour Foundation

Harrison's Story

Harrison was diagnosed with Neurofibromatosis Type 1 (NF1) at just two months of age. His symptoms first appeared as several large café-au-lait macules (spots) on his thighs. 

Since then, Harrison has received regular optic nerve tests from The Eye Clinic at The Children's Hospital at Westmead, as well as proper body checks with his paediatric neurologist. He is also part of the Children's Hospital NF1 Learning Clinic and their research groups for children living with NF1.

I can't believe it's been over a decade since his NF1 diagnosis. Harrison's condition now includes a Plexiform Neurofibroma on his leg, many café-au-lait spots on his body, freckling on his neck and groin, as well as lisch nodes on his eyes.

I'm grateful none of these symptoms has affected his love for life, he has enjoyed playing Rugby Union, Tennis, and most recently Sailing. More importantly, NF has not affected his ability to play Fortnite as often as he can with his mates!"

Carolyn Hill

Harrison's Mum

However, in recent years it's become clear that regular classroom learning is particularly difficult for Harrison; he struggles with attention in class and has difficulty with his short term memory. I've explained that NF is affecting his learning and he seems to be accepting of this, so I've made sure to answer his questions with reasoned, age-appropriate honesty.

Harrison has been lucky to receive support from his public school, he has learning support lessons from the Macquarie University' MacqLit' literacy program. Coupled with this, I have tried several different types of extracurricular learning, with varying degrees of success, I continue to search for an education style that will engage him.

I'm mindful, however, that emotional intelligence is as important (if not more so) than academic intelligence. I place equal importance on developing interpersonal skills such as kindness, compassion, gratefulness, and self-confidence because I believe these qualities will be highly valued when it becomes time for him to enter the workforce. 

Moreover, I know that focusing on these virtues will help him stay strong through anything NF1 may throw at him throughout his life.

I'm so proud to see Harrison growing into a cool, courteous and considerate young man. He is definitely my Hero.


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