Simon, 13, and his little brother George, 11, have Hypohidrotic Ectodermal Dysplasia, a rare condition which causes their skin to blister in heat, and their hair to be pale and sparse. It also stops normal tooth development, leaving the teeth pointed and only partially erupted.
Simon and George cannot take part in sports at school, and have to avoid direct sunlight.
Their mum Mandy says her son's condition generates a lot of interest: 'People stare because they look so pale.'
Whilst little Simon confesses that some of his friends are actually in awe of his pale complexion and fang-like teeth:
'Some kids make fun of how we look, but our mates think it's cool.'
Hypohidrotic Ectodermal Dysplasia can also result in the absence of sweating, leaving sufferers at risk of hypothermia. It primarily affects males, and can lead to potentially life-threatening illness in infancy.
Suggested For You
Get top stories and blog posts emailed to me each day. Newsletters may offer personalized content or advertisements. Learn more