A MUM is begging strangers to stop making 'rude and nasty' comments about her three children who all live with the same rare condition.
Stacey Chappell and her husband Jason have five kids, three of which were born with albinism.
This is a condition which gives them pale skin and visual impairments which can cause them to “walk into buildings”.
The 34-year-old mum said she 'didn't know' anything about the condition, which can affect the production of melanin, the pigment that colours the skin, hair and eyes.
Albinism affects the family’s everyday life as the three children have to wear factor 50 sun cream every time they go outside, even when it is cloudy.
The couple have also installed blackout curtains at home as sunlight can cause severe burns due to the reduced amount of melanin in their skin.
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After the birth of their first child Jay, 15, Stacey said she “blamed (herself)” for his albinism because “(she) made him” and the couple were in and out of hospital “all the time”.
The mum also suffered with postnatal depression, but has since reached out to Guide Dogs – the leading UK charity for people with sight loss – and said this has been invaluable.
Despite the daily challenges the couple face, they said they feel “privileged” to have three children with a “rare” condition.
They hope that by talking more openly about albinism, people will think twice before making “nasty” comments, as people should “never ever judge a book by its cover”.
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Stacey said: “People will go, ‘Look at his hair, look at his eyelashes’… and I’ll say, ‘Yeah, he’s an albino’.
“Then they’ll say, ‘Why do you feel like you’ve got to tell people?’, and I’ll say, ‘Do you know why? Because I’m so privileged; I feel so special having them as my kids’.”
Three of Stacey and Jason’s children – Jay, 15, Leon-James, three, and Amelia-Grace, one – were born with albinism and, as a result, all three wear glasses and have visual impairments.
The couple’s other two children – Sky, 13, and Lexi, 11 – do not have the condition.
The family say that every day is a learning curve for them.
Stacey said her son Jay can only see six metres ahead of him, which most people can see 3,000.
What is albinism and what are the main signs?
Albinism affects the production of melanin, the pigment that colours skin, hair and eyes, the NHS states.
It's a lifelong condition, but does not get worse over time.
Those with the condition have a reduced amount of melanin, or no melanin at all, which can affect their colouring and their eyesight.
Guidance states: "People with albinism often have white or very light blonde hair, although some have brown or ginger hair. The exact colour depends on how much melanin their body produces.
"Very pale skin that burns easily in the sun and does not usually tan is also typical of albinism."
They might also struggle with eye issues including poor eyesight, astigmatism, where the cornea is not perfectly curved and photophobia, where the eyes are sensitive to light.
People with the condition might also have nystagmus, where the eyes move voluntarily from side to side.
Some young children with albinism may appear clumsy. This is because problems with their eyesight can make some movements difficult for them, such as picking up an object. This should improve as they get older, the NHS states.
Stacey added that Jay also suffers with anxiety and “lacks confidence” as a result of his albinism, and he has been subjected to hurtful comments by his peers.
“He is too shy, and because he’s had such bad things happening to him, he thinks everybody is going to be nasty,” Stacey continued.
“Trying to explain that not everybody is nasty, and people are there to help you, is so hard.”
Leon-James is registered visually impaired and Stacey recalled another moment in a supermarket where a shopper made a “rude”, discriminatory remark.
Stacey said: “We were actually in Iceland, and he nearly walked into this man, and he nearly walked into this lady.
“He did it twice, so I apologised and said ‘sorry’ and I didn’t say anything else, and she went: ‘No wonder he can’t see with those stupid glasses on’.”
Stacey pushed a lot of people away at first after Jay was born, and she said she felt guilty and responsible for her children’s albinism.
However, when Jay started going to school, the couple began receiving support from the local council’s visual impairment team and then Guide Dogs, which has been “amazing”.
Stacey said it is easy to “take everything for granted” and she feels many people are “ignorant” to the challenges families may face, particularly when it comes to health conditions.
However, she hopes that, by speaking out about albinism, people will be more open-minded and want to help, rather than discourage and pass judgment.
“You know that saying – ‘never ever judge a book by its cover’ – and I think just the way people look at other people,” she said.
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“If people knew about that condition, even with any kind of visual impairment, or any other condition, then I think this world would be a lot different.”
Guide Dogs has recently launched its We Find the Way advert, which champions the My Life Skills service that Guide Dogs offers.
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