A child born with a rare eye condition that makes it painful for her to face the sunlight has been dubbed ‘our little vampire girl’ by her parents.
Lucy Palmer, aged three, was born without irises, leaving her with two big black pupils. It means she is unable to control the way sunlight streams into her eyes.
‘In the day time she would scream and want to sleep. But as soon as the sun went in she stopped crying,’ said her father Peter Palmer, 38, from Manchester.
‘We started closing the curtains and that’s when we called her our little vampire girl.’
Lucy Palmer, born with a rare eye condition that makes it painful for her to face the sunlight, has been dubbed ‘our little vampire girl’ by her parents
Lucy, aged three, was born with no irises, leaving her with two big black pupils. It means she is unable to control the way sunlight streams into her eyes
Lucy was diagnosed with anterior segment dysgenesis with glaucoma which can be caused by a gene mutation and affects the development of the eye in the womb.
The condition causes abnormalities to the front of the eye meaning Lucy’s irises are poorly developed and she can’t control the sunlight coming into them.
Rare genetic defect affects the development of the eye in the womb
As a result of the condition she has no vision in her right eye and only 20 to 30 per cent in her left eye.
Lucy has to wear category four strength sunglasses whenever she goes outside.
Said mum-of-six Charmaine Hallam, 41: ‘From when she was born she just wouldn’t open her eyes when we went outside.’
‘We kept taking her to the doctors and A&E at different hospitals but they just kept telling us ‘babies cry’.
As a result of the condition Lucy has no vision in her right eye and only 20 to 30 per cent in her left eye. She has to wear category four strength sunglasses whenever she goes outside
Dad Peter said: ‘It’s bizarre, she’ll walk into doors at home but then suddenly she will say ‘look there’s an ant on the floor’. ‘We just don’t know how she sees the world.
A worrying family trip in the sun
It was a family trip to the sunny Lake District when she was six months old which made the pair even more determined to get a diagnosis for her.
Occupational therapist Peter said: ‘It was really sunny and she screamed more than ever but would stop at night time. It was like she was a vampire.
‘We took her back to the hospital and the doctor said he didn’t think she had any irises.
Despite her many health problems, Lucy has been hitting her milestones in learning and development as any other child would
WHAT IS ANTERIOR SEGMENT DYSGENESIS?
Anterior segment dysgenesis (ASD) is a range of eye disorders which affect the front of the eye – including the cornea, iris, lens and the ciliary body, which controls the shape of the lens.
There are various conditions within ASD and someone may have one of more of them.
60 per cent of people with ASD go on to develop glaucoma, in which the optic nerve is damaged by fluid buildup in the eye.
ASD is a genetic condition, and treatment for symptoms may include glasses, medication or surgery.
Signs of ASD are:
- An abnormal iris – the coloured ring round the pupil
- An enlarged or smaller cornea
- A pupil which is not in the centre of the eye, or having more than one pupil
- A lens which is in the wrong place or doesn’t exist at all
- Cataracts (cloudy lenses)
- Thinning of the cornea
Source: Genetic and Rare Diseases Information Center
Lucy has had nine eye operations so far. Doctors tried to save the sight in the right eye but lost that battle.
Peter said: ‘It’s bizarre, she’ll walk into doors at home but then suddenly she will say ‘look there’s an ant on the floor’.
‘We just don’t know how she sees the world.
‘Sometimes she’ll say it’s bright and foggy and sometimes she says it’s dark.
Charmaine and Peter were told as a result Lucy had developed another genetic disorder known as axenfeld-rieger syndrome which could still cause further problems.
When she was seven months her parents were told that Lucy could have a heart defect and potentially severe learning difficulties.
‘We were told it was a possibility she would be like a two year old her whole life, we went home and cried.
Hitting development milestones and learning Italian
‘But she’s hitting her milestones in learning and development as any other child would. I’ve even been teaching her Italian.
So far Lucy has had nine operations on her eyes to treat the glaucoma.
Two years ago she also had a donor transplant to replace a piece of muscle in her eye.
Lucy was doing well and attending nursery but then four months ago she fell onto the carpet while riding a toddler trike round the living room.
She developed a limp and within six weeks her legs had completely seized up and she was dragging them along the floor.
Lucy has also been diagnosed with juvenile arthritis, which requires her to go to hospital once a week for steroid injections and hydrotherapy
She was finally diagnosed with juvenile arthritis.
Peter said: ‘When they said arthritis I couldn’t believe it.. I was thinking that’s something that old people get.
‘I was scared about the life she was going to live – being blind and having arthritis.
‘She has to go to hospital once a week for steroid injections and hydrotherapy and every other Friday she goes so they can take pressure readings of her eyes.
Lucy (pictured right) with her younger sister Emily. Their mother, Charmaine, who is Lucy’s full time carer worries about how Lucy will cope when she goes to school in September
Charmaine, who is Lucy’s full time carer, said: ‘I know it’s going to be hard for her when she goes to school in September.
‘At nursery children would ask her what’s wrong with her eyes.
‘She knows her eyes are different but doesn’t know they look different so it’s something I’m worried about when she starts school.
‘We call her our little vampire girl and she asks ‘what’s a vampire?’ We say ‘it’s someone who can’t go out in the sun’.
Her dad says: When other children come up to her and say ‘what’s wrong with your eyes?’ she tells them she’s special’