By Harriet Whitehead
A tot born with a rare eye condition which means she can’t go out in the sunlight has been dubbed ‘our little vampire girl’ by her doting parents.
Little Lucy Palmer, three, 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, said when Lucy was born she would keep her eyes tight shut and would scream whenever they took her outside – only coming to life at night.
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.
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 Lucy back.
Mum-of-six Charmaine from Manchester said: “From when she was born she just wouldn’t open her eyes when we went outside.
“She kept them closed all the time and she would constantly cry.
“She was crying and crying and crying. Peter said to me ‘is this normal?’
“It was awful, It’s horrible to think that she would have been in pain and not able to tell us.
“We kept taking her to the doctors and A&E 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 anymore. We were showing her love and affection.”
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.
“In the day time she would scream and want to sleep but as soon as the sun went in she stopped crying.
“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 per cent in her left eye.
Peter said: “She’s had nine eye operations so far. They tried to save the sight in the right eye but they lost that battle.
“She can see about 20 to 30 per cent in her left eye which is why she has to wear category four strength wraparound sunglasses.
“She can’t go outside without them because it’s too bright for her even on a normal day.
“She will 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.”
Peter said his daughter will often walk into doors but will then surprise him with what she can actually see.
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.
“Sometimes I will be stood next to her and she will do a 360-degree turn and won’t see me.
“I can see her listening trying to work out where I am and then other times she will be able to see me.
“We have to prepare when we go out. If we go to a family party or something we have to scan the room and see where things are in case she hurts herself.
“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’.
“We tell her she’s got special eyes. When other children come up to her and say ‘what’s wrong with your eyes?’ she tells them she’s special.”
Charmaine and Peter were told as a result Lucy had developed another genetic disorder axenfeld-rieger syndrome which could still cause further problems.
Peter said: “When she was seven months we were told she could have a heart defect and could have severe learning difficulties which was a massive bombshell.
“We were told it was a possibility she would be like a two year old her whole life, we went home and cried.
“But she’s hitting her milestones in learning and development as any other child would. I’ve even been teaching her Italian.
“She’s exceeded all of our expectations and is such a determined little girl.”
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.
After three x-rays at different hospitals 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 had to go into hospital to have intravenous steroid treatment.
“She had three appointments then the following week she went in for another three where they pumped her full of steroids to try and get it under control.
“Some days she will need a wheelchair and others she’ll be on her feet again, she can’t walk for a long period of time.
“She says ‘daddy my legs hurt’ or ‘daddy my legs are a bit busy’.
“We don’t know if the juvenile arthritis is linked to the genetic condition or whether she’s just a really unlucky girl.
“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.
“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.
“She will say to me ‘how many times am I going to hospital this week? How many of those are bad times?’
“When she goes for her eye tests she knows that’s a good day but when she goes to have steroid treatment for the arthritis and they have to put a cannula in and pin her down to inject her knees that’s a bad day.
“She’s fully aware of what’s going on, it’s heart breaking. It kills me when she has to have her injections.
“If they have to pin her down she screams that loud and shouts ‘daddy help me’. I can’t cope with it.”
Charmaine and Peter said they know life is going to be hard for Lucy, but they are determined that she live as full a life as possible and isn’t stopped from doing what she wants to do.
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 doesn’t know any different. 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’.
“It helps to explain her condition and it makes her laugh. She’s brilliant. She’s such a fighter.”
Peter said: “It’s amazing. These past few weeks she’s really been pushing herself beyond what you would expect.
“I’m hoping she will be able to live a pain-free life. I want her to have a full and enjoyable one.
“I just hope she’ll keep her sight in her left eye. Our focus is on protecting her and keeping that sight because we don’t want her living in darkness.
“We also want to raise awareness of her condition.
“Although it’s rare we want parents to know the signs and make sure they get their child checked out if they think there’s something not right.”