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.