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Poppy's nystagmus story

When we first came up with the idea of the #nystagmusbigswim as the theme for this year's Nystagmus Awareness Day, we had no idea there would be so many amazing adults and children taking part, making their families and friends proud and earning the praise and gratitude of the entire nystagmus community.

Seven-year-old Tyler raised nearly £400 altogether in sponsorship and gained his 10 metre swimming badge. Well done, Tyler!

Annabelle not only achieved her Level 3 swimming badge, but smashed through her original sponsorship target raising more than 10 times the amount. Annabelle, you're a star!

Lucy, whose daughter has nystagmus and is a member of the GB Para Academy swimming squad, got all 600 members of her swimming club involved in the #nystagmusbigswim. Thank you, Lucy!

Sarah swam as far as she possibly could in an hour in honour of her baby granddaughter, who has nystagmus. Go Sarah!

And then there is Poppy ...

I'm going to make my dreams come true

"My name is Poppy. I'm 5 years old and registered sight impaired, as well as being born with only half a working heart. I wanted to raise money for the Nystagmus Network to say 'thank you' to them for working so hard to increase understanding of my main eye condition and fund research to find treatments for children and adults like me."

Poppy had a very tough start to her life, but continually amazes her family

Poppy's Mum, Emily, writes:

"Poppy was declared days from death at my first pregnancy scan. I was told to consider abortion as it looked like her quality of life would be very poor. She had open heart surgery aged 2 weeks and again at 5 months, which is when doctors became concerned about her eyesight. We've never been sure if she was born with nystagmus and sight loss or whether it came from complications during one of these surgeries.

Having struggled with the devastating diagnosis that Poppy has only half a working heart, it was only once Poppy started nursery school that we realised that her eyesight was as much of a problem to her. We suddenly understood her terror at visiting anywhere new or being left with different carers. We began another steep learning curve to make learning and everyday experiences a lot more accessible for her."

Poppy loves ballet and swimming like her friends

"Poppy had her third open heart surgery exactly a year ago and, after missing three months of school, life has settled into a new normal. She still needs her wheelchair for outings, but she has achieved her dreams of doing ballet and swimming lessons like her friends. She is thriving at school and much steadier on her feet. She loves word games like Boggle and Scrabble and she has blossomed into a happy, hilarious and very caring little girl."


Poppy practised for 6 months
for her #nystagmusbigswim



Poppy and her "very patient" swimming teacher

Poppy achieved her Puffin award

Poppy says: 

"I was really excited to be part of the national Nystagmus Network Big Swim. On Saturday 4th November I achieved my Puffin Award for swimming 5 metres with a float. This may sound a tiny achievement, but it is huge for me."

Poppy has raised almost £300!

Congratulations, Poppy, on your fantastic achievement in the #nystagmusbigswim, from everyone at Nystagmus Network.

The Nystagmus Network is here to support everyone affected by nystagmus. See our website or get in touch.

Please consider making a donation to the Nystagmus Network. Thank you.

The Nystagmus Network relies entirely on membership subscriptions, fundraising and donations to continue its important work proving support and information to the nystagmus community, raising awareness and funding research.

Want to share your nystagmus story?

If you would like to share your story with the nystagmus community, please get in touch with us using the contact form here.

We hope you have a great day from everyone at the Nystagmus Network!
Who is the Nystagmus Network?
The Nystagmus Network has been providing support and information about nystagmus for over thirty years. The charity supports families affected by the condition and has been at the forefront in funding the research to find effective treatments. 
Donate here
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