Dagenham boy, four, with rare skin condition chosen to front charity campaign
PUBLISHED: 11:26 18 August 2017
Jeans for Genes
A four-year-old boy with a rare skin condition has been chosen to front a national charity campaign.
Gabrielius Misurenkovas, who lives in Dagenham, has the rare genetic disorder recessive dystrophic epidermolysis bullosa, where his skin blisters when it comes into contact. When the blisters heal, they leave severe scarring.
The tot is set to appear on fundraising packs and in a campaign video for the charity Jeans for Genes, which supports children with genetic disorders, alongside his parents Jolita and Linus.
The charity is holding a Jeans for Genes day, which encourages people to wear jeans to work and school in exchange for a donation.
Jolita, 37, said: “We were very happy to be involved in the campaign. Few people understand Gabrielius’s condition - or have even heard of it.
“We want to do our bit to help make people aware of what children like Gabrielius go through.”
In order to help their son, Jolita and Linus must lance the dozens of blisters that constantly develop and cover his body.
The little boy’s condition puts him at very high risk of developing a form of skin cancer.He is also at risk of vision loss, infection and malnutrition, as the blisters also form inside the mouth and digestive tracks.
Children with the condition are commonly called ‘butterfly kids’ as their skin is so fragile.
Gabrielius’ whole body is covered in bandages and he has to wear gloves whenever he goes outside to protect his hands.
Jolita said: “Recently he was limping as he played. I wanted to check him because I could see he was struggling.
“But he refused, he kept telling me it was nothing. He just wanted to play. Eventually it got so bad he couldn’t walk on his feet anymore. Only then would he let me check.
“When I looked his legs were so bad and his feet. The blisters were like a big bag on his knee.”
In the #dreamforgenes campaign, which asks parents with children affected by genetic disorders for their dreams, Linus, 38, said that his is: “That children like Gabrielius should be able to live pain free.”
To register for Jeans for Genes Day on Friday, September 22, visit jeansforgenesday.org
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