A few days after giving birth to a baby boy with a shock of white hair, Sian Edwardson asked the midwife whether he had albinism. The midwife brushed her question aside, but her doubts grew, as Ellis hardly opened his eyes in the first eight weeks. Then the doctors confirmed that Ellis had, indeed, albinism, a genetic condition that causes pale or white hair and skin due to a lack of melanin.
Like most people with this condition Ellis has impaired vision. His mother explains, 'Ellis is registered blind but he does have some sight. He is extremely sensitive to light and has photophobia, so he has to wear sunglasses whenever he goes outside.'
As well as having to cope with a severe visual impairment, Ellis will have to battle against the stereotypes and misconceptions associated with albinism.
His mother says, 'I looked up the condition on the internet and found people with albinism were being murdered in Tanzania and their body parts sold and made into potions that are believed to bring good luck and wealth.
'The "evil albino" stereotype is rife throughout most of the world and it is not helped by films such as "The Da Vinci Code" and "The Matrix Reloaded" featuring evil albino gunmen. The National Organization for Albinism and Hypopigmentation in America found that between 1960 and 2006, there were 68 films featuring an evil albino. Because of this, I don't really like using the word albino, but it is a term people understand.'
SETTLING IN TO PRE-SCHOOL
Ellis, now aged two and a half, is looked after part of the time by a childminder and since September last year he has been attending three afternoons a week at Cylch Meithrin, a Welsh-medium pre-school at Ysgol Llaingoch in Holyhead, Anglesey.
Cylch leader Sue Smith says, 'Llinos Vaughan Roberts from the specialist teacher service for the visually impaired came to see us when Ellis first started and she said we didn't need to adapt anything in the nursery. However, because he is visually impaired, we try not to change things around too much and if we do, we make sure we always tell him, so he is aware of the new layout. His name tag is a different colour to the other children's so he can easily distinguish which one is his.
'He is registered as severely visually impaired, but if you are close to him he can make out shapes. He loves doing jigsaw puzzles; if he gets close enough, he can see the shapes of the jigsaw pieces.
'Ellis doesn't like a lot of noise because of his visual impairment as it confuses him, so if it is too much for him, his one-to-one helper takes him to the book corner where it is quieter. There are only 20 children in each session, so that makes it easier as it is a small cylch.'
Ellis has to have 50-plus factor sunscreen on at all times, and staff put on more cream in the summer when he is running around outside. They also have to make sure he always wears a hat. Indoors, if the light is really bright and the sun is streaming through the window, they will shut the curtains to make it darker for him, even in winter.
BUILDING RELATIONSHIPS WITH OTHER CHILDREN
So far, says Ms Smith, the children haven't really asked about Ellis wearing sunglasses; a lot of them bring sunglasses into the nursery to wear. However, Ellis's mother does have concerns that his visual impairment will make it harder for him to forge friendships.
'I worry that because he doesn't make eye contact, he will find it harder to make friends,' she explains. 'He is very friendly and sociable and he goes up to other children, but I see them looking at his eyes sometimes and they do look quite strange, as due to his albinism he has nystagmus, so he is unable to control his eyes, and they move around all the time.
'I have been talking to Sue about how we can work on developing his eye contact. He often looks down because if he looks up, the light can be too harsh for his eyes.
'Sue's fear is that Ellis may be bullied because of his condition when he is older, and she wants to make sure that by then, he is confident enough to deal with any antagonism.'
Ms Smith adds, 'Most children registered blind have some sight, but at this age, we are still trying to work out how much he can see, so it is important that nurseries such as Cylch Meithrin invest time and effort into working out how well visually impaired children can see.'
Ellis is included in all the activities at the Cylch. Carys Hughes, his one-to-one helper, is funded by Isle of Anglesey County Council and she enables him to join in with everything.
Carys is the daughter of Ellis's childminder, Janet Hughes, so she has known him since he was a baby. This means she knows exactly what his needs are and how to work with him. This is very reassuring for Ellis's mother, who says, 'It made a huge difference that Carys is his one-to-one and it meant he adjusted really well to coming to the cylch and I didn't feel so anxious. Carys makes sure he is included in everything and keeps an eye on everything he does.
'He likes to sit in the book corner at the cylch and look at books. He also likes singing and the staff at the nursery do a lot of singing with him. It is a bilingual nursery, so he comes home singing both Welsh and English songs,' says his mother.
'I am hoping that when he starts school, Carys will continue to work with him as his one-to-one. I have a lot of anxiety about Ellis starting school. He will be joining his big brother Ioan at Ysgol Llaingoch when he is five. It is important that Ellis attends a mainstream nursery as he will be going to a mainstream school.'
Ellis's mother has had a lot of support from Ms Vaughan Roberts, the specialist teacher service for the visually impaired for Anglesey and Gwynedd.
'She has been brilliant,' says Ms Edwardson. 'The meetings that I have had with her since Ellis was six months old have set aside a lot of the initial worries I had about Ellis attending nursery and I'm certain this has had an effect on him, as he is a very confident little boy. The North Wales Society for the Blind have helped a lot as well.'
Ms Vaughan Roberts works closely with the nursery and his health visitor monitoring Ellis's development.
- The Albinism Fellowship is a support organisation for people in the UK and Ireland. Go to www.albinism.org.uk
- The American organisation, the National Organization for Albinism and Hypopigmentation (NOAH), also has a website with useful information at www.albinism.org
- Raising a Child with Albinism: A Guide to the Early Years edited by Susan DuBois (NOAH)
ALBINISM: FACTS AND FIGURES
- Albinism is a genetically inherited condition which results in a reduction or complete lack of pigment in the skin, hair and eyes. This can result in having pale skin which burns easily in the sun, virtually white hair, very severe short-sightedness and photophobia (a severe sensitivity to light).
- In almost all types of albinism, both parents must carry an albinism gene to have a child with albinism. When both parents carry the gene and neither parent has albinism, there is a one in four chance at each pregnancy that the child will be born with albinism.
- Albinism occurs in all races and in Britain, one in 17,000 people are born with some type of albinism.
- People with albinism will have some degree of nystagmus, which is involuntary eye movement, and they do not have binocular vision (the ability to use both eyes at the same time). However, most people with the condition adapt so that there is not a sense of double vision.
- People with albinism are at an increased level of risk of developing skin cancer, so it is essential to protect their skin with a hat and sunscreen.