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A tot born with a rare eye condition who experiences pain in the sunlight has been dubbed “our little vampire girl” by her doting parents.
Little Lucy Palmer (3) is blind in one eye and has restricted vision in the other after being born with no irises – leaving her with two big black pupils and unable to control the way sunlight streams into her eyes.
Parents Charmaine Hallam (41) and Peter Palmer (38) say when Lucy was born she’d keep her eyes tightly shut and would scream whenever they took her outside in daylight – only coming to life at night.
“She was crying and crying and crying. It was awful. It’s horrible to think that she was in pain and not able to tell us.
“We kept taking her to the doctors and to emergency rooms at different hospitals but they just kept telling us ‘babies cry’.
“We were told to give her love and affection, which was awful because she was our little girl and we couldn’t love her more. We [already] were showing her love and affection,” says Charmaine.
It took six months for Lucy, who has to wear category-four strength sunglasses whenever she goes outside, to be diagnosed with the rare anterior segment dysgenesis which developed into glaucoma.
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.
“It was really sunny and she screamed more than ever but would stop at night. It was like she was a vampire. In the day she’d scream and want to sleep but as soon as the sun went down she stopped crying,” says occupational therapist Peter.
“We started closing the curtains and that’s when we called her our little vampire girl.
“We took her back to the hospital and the doctor said he didn’t think she had any irises. Her eyes had always been jet black but we had previously been told her irises would develop.”
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’s unable to control the sunlight coming into them.
As a result of the condition she has no vision in her right eye and only 20 to 30% in her left eye.
“She’s had nine eye operations so far. They tried to save the sight in the right eye but they lost that battle.
“She’ll never be able to enjoy or appreciate the sunlight because it’s just too strong for her and she’ll risk losing the rest of her sight.”
And the youngster’s struggle was made even worse three months ago when she was diagnosed with juvenile arthritis.
But her proud parents are determined that her conditions won’t hold her back.
Peter says his daughter will often bump into things but will then surprise him with what she can actually see.
“It’s bizarre, she’ll walk into doors at home but then suddenly she’ll 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. Sometimes I’ll stand next to her and she’ll do a full turn and won’t see me.
“I can see her listening, trying to work out where I am and then other times she’ll be able to see me.
“She says things like, ‘Daddy, I’ve been watching TV and lots of people have two eyes. You’ve got two eyes and I’ve got two eyes but why does only one of my eyes work?’
“I always say ‘because that’s the way God made you’. When other children come up to her and say ‘what’s wrong with your eyes?’ she tells them she’s special,” says Peter.
Two years ago she also had a donor transplant to replace a piece of muscle in her eye.
Juvenile arthritis
Lucy was doing well and attending nursery school but then four months ago she fell onto the carpet while riding a toddler trike around 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.
After three X-rays at different hospitals she was finally diagnosed with juvenile arthritis.
“I was scared about the life she was going to live – being blind and having arthritis.
“It’s devastating for us, I can’t lie to her about it. She’s so smart and knows when we’re going to hospital and what it means.
Charmaine and Peter say they know life is going to be hard for Lucy. But they’re determined that she live as full a life as possible and isn’t stopped from doing what she wants to do.
“We call her our little vampire girl and when she asks ‘what’s a vampire?’ we say ‘it’s someone who can’t go out in the sun’.
“It helps to explain her condition and it makes her laugh. She’s brilliant. She’s such a fighter,” says her mom Charmaine.
