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Kate’s Story

23 August 2019

Kate's Story

Kate Morgan, 32, was diagnosed with NF1 as a child. She has refused to let her NF1 hold her back: she has travelled the world, has 3 degrees including an MA and is now a qualified primary teacher, married, and mother of a gorgeous 1 year-old (who also has NF1).

She describes her journey.

In many ways, I have been quite lucky with my NF. For a start, I was correctly diagnosed when I was 4. It was a lot easier to get Statements then, and I was Statemented right through my

education, which was invaluable.

My symptoms are principally that I have a fibroma on my hip, which restricts my mobility. I have also a large fibroma on my neck, which means I have poor sight. I have had part of this fibroma removed by surgery, with a second part to be removed later this year. I also have slight learning difficulties.

Growing up I had to learn to live with the restrictions caused by my NF. I couldn’t do contact sports, and one disappointment was that I couldn’t do the full DofE (Duke of Edinburgh Award).

My parents did get very helpful support from Nerve Tumours UK. Back then, they were known as The Link. My parents would get the newsletters, and
went to the Information Days in Bristol which were very useful.

Today, I’m 32, and I’m a teacher, currently of Year 1 (5 year-olds) – I’ve taught all the way up to Year 6. All the schools I’ve worked for have been fantastically supportive. I don’t hide my condition from the children at school. They know that I sometimes walk with a limp, or I can suddenly get tired and have to sit down for a few minutes.

I now have a little girl of my own. Esme is just 1. Her NF1 was confirmed at 6 months. She has some café au laits, but is otherwise hitting her milestones. When Esme started nursery, it was very helpful to be able to give them the information from Nerve Tumours UK, so they could understand NF1 and Esme.

"It has been an amazing first year with Esme, and her NF1 is part of who she is. We should celebrate our differences."

– Kate

Esme is taking part in the EDEN study, which is studying a cohort of babies with NF1 to measure their early development. She’ll shortly go and see them as she’s just had her first birthday, and she’ll go back when she’s 2 and 3.

I have been quite mildly affected by NF1 in my life, but I know it could be more for Esme. I’ll support her, and neither of us need to be afraid of it. I’ve worked with children with far worse
difficulties. I’ll not be afraid to talk to Esme about it.

I’ve learnt to realise you can get around your NF limitations, if you put your mind to it. You just find a different way. The hardest thing has been other people’s reactions – not understanding NF and feeling awkward about talking about it. That’s one of the things I love about working with children – they’re not afraid to ask.

My advice to other parents of children with NF is don’t hesitate to ask for support. Celebrate the NF as part of your child, and enjoy everything about them. It has been an amazing first year with Esme, and her NF1 is part of who she is. We should celebrate our differences.
 

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