Living with Nystagmus in Childhood – Molly’s Story

My name is Molly. I’m 10 and I’ve got
an eye condition called nystagmus. It’s like your eyes go a bit wobbly sometimes and
you don’t really notice it. And you can find words a bit blurry sometimes.
I’m Shelley and I’m Molly’s mum. Really early on actually, I sort of noticed that
Molly wasn’t making eye contact with me. She couldn’t maybe pick up small objects
or recognise relatives from across the room. So, at about eight months at the health visitor
check we were referred to an eye clinic and there they told us that she had nystagmus
which I’d never heard of. You know, I assumed it was something you could cure and they said,
oh she has this, she’ll have it for life. And that was all the information that we had.
I remember feeling quite stunned actually and not quite knowing what to do. I joined
a parents group, like a local support group for children with different visual impairments
and eventually got a referral to Great Ormond Street that we asked for and that’s where
they diagnosed her as having albinism. So, that was the reason for her nystagmus.
I think the biggest question was, what’s Molly’s world like. What can she see? And,
eventually we were referred to the eye hospital where they could test her vision. But obviously,
before she could speak. That was quite hard. They used symbols and Molly had to point at
symbols. Pre-school, the local sensory needs team would
visit us at home and then at the nursery that she went to and gave lots of sort of quite
general advice. As she’s progressed to primary school more things it seems need to be adapted
because information becomes much more written and I think Molly finds a lot of text quite
tiring to read. My favourite kind of font is big and I have
my sheets printed on yellow paper cos I find it easier to see. I have something called
a prodigy that helps me in class. Sometimes I write underneath it because I can read my
writing and like for worksheets I normally put that under Take Photo and read it. I use
my iPad as well because that I zoom in and stuff and it has some apps on that I use.
On your marks set, go. I like athletics and hockey. So, here, they’re
my favourite sports. I’m Helen Halsterfer [ph]. I’m a learning
support assistant and I also coordinate the running club. Molly loves running and to help
her with her running, we have some things. For example, she runs on the inside of the
track following the strongest line round. And when she’s involved in competitive cross
country events, we have a guide runner to highlight any obstacles in her path.
So, Molly doesn’t seem to think of herself as having any eye condition and she adapts
without ever really thinking about it. So, she will tilt her head to fund the null point
which is the point where they nystagmus is dampened down. And she does that without really
knowing it. When I went to get my passport photo taken,
like I thought I was facing forward but he said that I was facing to the side. So, I
turn my head without noticing. The sight she does she uses really well. And
although her sight won’t improve, it won’t deteriorate either. So, she is only improving
in that she is learning how to adapt things. And we are learning how to adapt things for
her to make life easier for her. And there’s been nothing at all she’s wanted to do that
she’s not been able to do.

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