Evan has the most severe form of the disorder, meaning that he is at constant risk from life-threatening infections.
There is sadly no cure, only treatments, and Evan’s doting mum De De gives him two baths a day to manage his condition and keep him comfortable.
‘The bathing process is really important with people with Ichthyosis because their skin is growing 10 times faster than the average person. We bathe him because we need to exfoliate his skin – we need to make sure his skin stays clean. Since his skin is at risk of infection everything has to be very clean and sanitary.’
Evan sheds a huge amount of skin during bathtime, and afterwards needs to be coated with an emollient called Aquaphor to stop his skin from cracking or ripping, and act as protective barrier. And Evan certainly isn’t complaining!
‘He’s usually very happy and giggly when he gets Aquaphor!’ De De says.
As well as infection, Evan is also at risk of suffering from heatstroke as he is unable to sweat and can overheat very easily. His body burns excess calories through growing the extra skin, meaning he needs to eat more to counteract this.
‘We’re constantly pushing fluids, drinks, food as much as we can, just to keep him up on the calorie intake,’ De De says.
Evan was born nine weeks early and spent 58 days in hospital before his parents were able to take him home. They weren’t made aware that he was suffering from Ichthyosis until just two days before he was born, and had never even heard of the condition.
‘It was hard because we really didn’t know what to expect and it was scary just hearing the information that was available at that time in 2010. Hearing that a lot of babies might not survive. I remember looking at him though he was covered up, it was just a relief for me to see his tummy go up and down.’
Despite everything, Evan, now 5, has grown into a really cheery, happy little boy, who ‘rarely complains about anything’ and doesn’t let his condition get him down.
‘There’s been instances where people have made bad comments, and you do your best to stay positive.’
‘We would never want Evan to feel uncomfortable going out in public. He does sometimes seem to be a little shy when he notices people staring at him. I don’t want him to react negatively. I would rather live a positive lifestyle and not let some stranger who was being rude ruin his day.’
And his condition has certainly not made it any harder for him to make friends, as Evan has settled in brilliantly at his pre-school.
‘He’s pretty much known as the rock star in his school. Everybody waves to him – he literally doesn’t put his hand down when he’s walking in the hallway.’
‘I’ve gone to his school quite a few times to teach the students about Ichthyosis, just if they’re curious about what’s going on with his skin. And every time I go in there he’s right there in the front row, you know, helping me teach the other students.’
Evans parents hope that he will continue to lead such a happy, positive life.
‘I want Evan to be somebody that people can look up to. Somebody that people can say ‘wow, he’s got a lot of challenges, his appearance isn’t the same but he can teach people a lot of things.’’
For more information on Evan’s condition, visit www.firstskinfoundation.org.