£50

raised by 3 supporters
Nystagmus Network

Nystagmus is ... this Christmas

In the run up to the festive season, we're letting everyone know how nystagmus affects the many children we support and asking you to help the Nystagmus Network to continue to provide support, raise awareness and fund research.
Closes on 31/12/2018
Charity Registration No: 803440

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Story

Small babies with nystagmus sometimes cant recognise their own mothers face

My baby doesnt look at me"

Every now and then a Mum calls the Nystagmus Network support line and, because shes sounding so upset, I know what shes going to say: My baby doesnt look at me. This happened again just last week. Every time, it brings back for me one of the most painful memories of having a baby with nystagmus.

I was a new Mum, for the second time around. My beautiful baby girl was going to make my little family complete. All I wanted to do was hold her, love her and keep her safe. I cuddled her in my arms and felt overwhelming floods of brand new maternal love.

Its different for nystagmus Mums

I would gaze at my daughters face as I held her and fed her and Id feel that strong bond building that Id known with my first baby. But something was different this time. Unlike all those mother and baby adverts on TV and those romantic images of motherhood in magazines, where perfect babies gaze lovingly into the eyes of their mothers, my daughter didnt look at me.

Fast forward to wearing the same coat every day and always standing in the same place at the school gates, to her despair when she rushes up to another woman, thinking its me, to her anguish when she fears shes lost me, yet again, in the crowd.

Clinical proof

In 2016 researchers compared how children with and without nystagmus look at faces and were able to verify what Mums were experiencing. The nystagmus eye wobble creates strobe vision, which makes it difficult to recognise even familiar faces.

The study was funded by the Nystagmus Network and led by consultant paediatric ophthalmologist Jay Self and his team at Southampton Childrens Hospital, in collaboration with the psychology team at the University of Southampton and clinicians in Cardiff and Plymouth.

Children were shown two different images on a computer screen at the same time. The length of time they spent looking at each image was measured.

When shown photos of their own mother's face and that of another woman, children without nystagmus spent longer looking at their mother and found her face very quickly, whilst those with nystagmus looked at both faces for the same length of time without showing signs of recognition.

Mr Self said: These results indicate that children with nystagmus may have specific difficulty recognising faces.

Does my baby even know its me?

Back to that Mum on the end of the phone line and to all the new nystagmus Mums out there ... Yes, your baby knows who you are. She recognises you by the scent of your skin, the sound of your voice and the warmth of your arms around her. She just doesn't know what you look like yet ...

Please donate ... this Christmas

Please help the Nystagmus Network to fund more studies into nystagmus, to improve diagnostics and gain better understanding of this complex condition.

Thank you.

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Supporters

3

Keeley Grindle

1 month ago

Merry Christmas xxx

£10.00

+ £2.5 Gift Aid

Anonymous

1 month ago

Merry Christmas

Anonymous

1 month ago

About the charity

Nystagmus Network
Nystagmus Network

Nystagmus means involuntary movements of the eye. It impairs vision, affecting focus and depth perception. At least 1 in 1,000 babies are born with nystagmus. There is currently no cure. The Nystagmus Network is a UK registered charity which provides support, raises awareness and funds research.

Charity Registration No: 803440

http://www.nystagmusnetwork.org

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£50.00

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Nystagmus is ... this Christmas

Nystagmus Network