‘We placed ourselves in Mehki’s shoes to raise more awareness of my son’s rare condition in Hitchin’ says brave mum Laura
- Credit: Archant
The parents of boy with a rare genetic skin disorder raised awareness of his plight in Hitchin’s Market Place.
Brave six-year-old Mehki Barbour, who attends Highover JMI School in Cambridge Road, has lamellar ichthyosis which means his skin grows differently to normal and doesn’t exfoliate as it should, giving him a different appearance. To help keep him comfortable and well his mother Laura Levy has to cover him head to toe in a thick layer of a paraffin-based cream every couple of hours, night and day.
In order to raise awareness of the condition, Laura’s challenge was to cover herself in the cream in public in the centre of Hitchin, and to reapply it every half an hour for three hours. She also roped in Mehki’s father, Jonathan Barbour, to take part as well.
Laura said: “The aim was to try and place ourselves in Mehki’s shoes – to experience the stares, the grease on our skin and to demonstrate how to handle questions and people’s reactions.
“It was also our aim to make the world a softer and more accepting place for those with visible differences.
“The Ichthyosis Support Group have supported us since Mehki was born. They receive no government funding but do a fantastic job in supporting us through volunteer work and operate solely on fundraising events such as this.”
It’s estimated Mehki has already been creamed more than 13,000 times in his short life. The paraffin cream used is also highly flammable, very greasy and ruins clothes.
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Laura added: “Even though it was raining we had a great turnout. It was great to see such support from our friends and the school. The atmosphere was amazing.
“We had one of the mums from school help with face painting. We raised £250 on the day, raising more than £1,000 in total.
“I also have to say a big thank you to ISG, Great Ormond Stree Hospital, Highover JMI School, NHS school funding and Herts County Council – we are truly grateful. The look of joy on Mehki’s face when he creamed his father was the highlight!”
To donate search for Laura Levy on uk.virginmoneygiving.com.