Children like Sebastien helped by Jeans Day
SEBASTIEN Pettitt cannot speak and his family have had to teach him simple daily tasks everyone takes for granted, like how to fall asleep and make eye contact.
The four-year-old from Spilsby is on of only around 900 people world-wide with Phelan McDermid Syndrome.
The condition means Sebastien has no independent life skills and his family have taken the decision to move back from their former home in France to Lincolnshire.
His mum Dominique said: "We knew from day one there wasn't something quite right.
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"He could not maintain eye contact or fall asleep naturally.
"My other son, Leon, was nine months at the time and his behaviour was completely different."
Sebastien now attends Eresby Special School in Spilsby and Dominique said her son is thriving since he became a pupil.
"Sebastien has to be taught everything," she said.
"Babies usually put their hands out if they fall from sitting, we had to teach him to do that as he has no saving reflex at all.
"He could not sleep naturally and he could not feed."
She added: "He is a very, very bright and sunny little boy. His intelect is incredible to learn things the way he does.
"He has very beautiful eye contact now – that has come from school. He is also more confident now.
"Sebastien is the most amazing little boy.
"Everyone just falls in love with him when they meet him."
His family are backing Jeans for Genes Day on Friday which invites everyone to wear their jeans to work or school in return for a donation to children's charity, Genetic Disorders UK.
This year, the Phelan McDermid Syndrome Foundation, which supports families affected by PMS and conducts vital research into the condition, will receive a £4,625 grant from funds raised by Jeans for Genes Day.
It will pay for a UK family day, where more than 45 families affected by the condition from around the world will come together to share their experiences.
Dominique, said: "The Foundation has helped us so much.
"The information days they run offer great support for parents – I don't know what we would do without them."
Eresby Special School is also supporting Jeans for Genes Day.
Headteacher Michelle Holiday, said: "The school regularly supports different charities throughout the year, as well as our own fundraising, and we encourage the children to get involved.
"As a school, pupils and staff will also be supporting Jeans for Genes Day this Friday to help fund research into genetic disorders."
To get involved with Jeans for Genes Day, visit www.jeansforgenesday.org