Episode 67 | If We Listened - More Than NF1

If We Listened gives young people the microphone - because sometimes the people we spend so much time teaching have something to teach us too. They have opinions, experiences, questions and wisdom worth hearing.

In our first conversation, we meet a group of incredible boys living with Neurofibromatosis Type 1 (NF1). But this isn't a story about asking them to be inspirational or to represent everyone with a diagnosis. It's a chance to hear about their lives in their own words - the funny, frustrating, difficult, ordinary and wonderful parts.

Because a diagnosis can tell us what a condition is. It can't tell us what it's like to live with it. And it certainly can't tell us who a person is.

So we're giving these young people the microphone.

And we're going to listen.

What is NF1?

See Tom star in 'Beyond the Diagnosis: Kids living with NF1'

Neurofibromatosis type 1 (NF1) is a genetic condition that can affect people in many different ways. People with NF1 can develop changes to their skin, bones and vision, and some may have differences with learning or development. NF1 can also cause tumours to grow along nerves, which are usually non-cancerous but can sometimes cause problems.

No two people with NF1 are exactly the same, and everyone’s experience can be different.

Learn more about NF1 at the Children's Tumour Foundation.

Meet the boys

Meet Kai

Kai loves rugby league, cricket, maths and podcasting. As a result of NF1, he has tibial bowing, which required major surgery involving a titanium rod and bone graft. Twelve months later, he broke the titanium rod, and unfortunately, the bone graft did not take as hoped. He later fractured the graft while playing footy, and was eventually told that contact sport was no longer an option because the risk of further injury was too great. For a kid who loves footy, it was difficult news, but Kai has found other things he loves — including finding his voice through podcasting.

Meet Tom

Tom loves driving cars on his PC, collecting old tech and playing basketball. NF1 has affected Tom in a number of ways. As a young child, he developed glaucoma in his right eye and had two operations to relieve the pressure. His vision in that eye is now extremely poor, and the eye is enlarged as a result. He also has plexiform neurofibromas, a type of tumour associated with NF1, which have formed in his eyelid and right cheek, causing fullness on that side of his face. Despite the challenges NF1 has brought, Tom continues to pursue the things he loves and explore his many interests.

Meet Ari

Ari loves computer games, art, drama and cheese! As a result of NF1, Ari has multiple birthmarks, freckling and nodules on his body. He also has ADHD, poor muscle tone and has experienced developmental delays with fine motor skills, gross motor skills, speech and language. These difficulties have had a significant impact on his social skills. Despite these challenges, Ari loves expressing himself through art, drama and creativity, and exploring the things that make him happy.

Support

There are lots of ways you can help make a difference for people living with NF1 and their families. The Children's Tumour Foundation is working to support families, fund research and raise awareness of NF1 but they can’t do it alone.

Donate

Fundraise

Advocate

Mums’ Recommendations

The Children's Tumour Foundation have helped us so much over the years. They raise money and run camps for families affected by NF, are a wealth of information for families, and can recommend specialists. They even come to schools to talk to children about NF1 if a child at that school has NF1, helping the other children understand what it’s all about. Follow them on Facebook and Instagram.

NF Hero Book is a lovely book written by a parent for young children living with NF. It can be a great way to help little ones understand some of what they may be experiencing and feel less alone. I recommend reading it alongside your child and using it as an opportunity to talk about how it’s okay not to feel like a superhero all the time too. Having NF can be hard, and children don’t always have to be brave or strong.

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