A mum who has three children with albinism says she feels ‘so blessed’ to have them.
Stacey and Jason Chappell are parents to five children – their two sons, Jay, 15, and Leon-James, three, both have albinism, as does their youngest daughter, Amelia-Grace, once.
The children were born with the condition, which affects the production of melanin, the pigment that colours the skin, hair and eyes.
As a result, Jay, Leon-James and Amelia-Grace all wear glasses and have visual impairments. They also have to wear factor 50 sun cream when they go outside, and the family home is installed with blackout curtains as sunlight can cause severe burns.
Stacey and Jason’s other two children – Sky, 13, and Lexi, 11 – do not have the condition.
Stacey said: ‘I feel privileged. I’m so blessed to have them because it’s a rare condition.
‘We’re honoured to have them as our kids.
‘People will say, “Look at his hair, look at his eyelashes.” And I’ll say, “Yes, he has albinism.”‘
Full-time mum, Stacey, 34, and Jason, 40, a cleaner, from South Tyneside, didn’t know anything about albinism prior to their children’s diagnoses.
After their eldest, Jay, was diagnosed at three weeks old, Stacey said she ‘blamed [herself]’ for his albinism because she ‘made him’.
In and out of hospital, the new mum suffered with postnatal depression and initially rejected help from others, as she felt it was her responsibility to look after her son.
Stacey said the information given to them at the time was limited, but they ‘got on with it’, doing everything they could to support Jay.
‘With him being our first child, it was a learning curve.’ Stacey said.
‘I think it was more challenging when he started going to school – and that’s when we started figuring out, “Wow, this is totally different.”‘
Jay was registered severely sight impaired. He uses size 36 font to read and sometimes has trouble walking outside or crossing the road due to his reduced vision.
Different weather conditions – sun, rain, and snow – can affect Jay’s ability to identify buildings, cars and footpaths, and this has led to several accidents.
‘As he got older, as he got taller, he was having more and more accidents. He actually walked into buildings.
‘What we can see at 3,000 metres, he can only see at six metres.’
Thankfully, when Jay started school, the family began accessing support – both from the local council’s visual impairment team, as well as Guide Dogs – the leading UK charity for people with sight loss.
Specialists have helped Jay use a cane to navigate independently, as well as read large-print books, and master technology.
The younger children have also received support too. Leon-James is currently being supported through his transition from nursery to primary school, and Amelia-Grace attends My Time to Play sessions set up by the charity, which help children with sight loss develop a broad range of skills through play.
The sessions also allow Stacey and Jason to connect with other parents of children with visual impairments.
‘It’s so nice to actually chat to somebody who understands you and your child,’ Stacey said.
‘Nobody’s there to judge you, and sometimes you do feel like you’re judged.’
Having albinism also affects her children’s confidence. Jay suffers with anxiety 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, who is also registered visually impaired, has also received hurtful comments from strangers.
Stacey said: ‘We were actually in the supermarket, and he nearly walked into some people.
‘I apologised and said sorry, but the woman said: “No wonder he can’t see with those stupid glasses on.”‘
Despite the daily challenges the couple face, they hope that by talking more openly about albinism, people will think twice before making ‘nasty’ comments. As Stacey say, people should ‘never ever judge a book by its cover’.
Stacey said it is easy to ‘take everything for granted’ and she feels many people are ignorant to the challenges families may face.
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.
‘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 have launched their We Find the Way campaign, which champions the My Life Skills service that Guide Dogs offers.
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