A BOGNOR REGIS family of a little boy with a rare genetic disorder has been chosen to front a national charity campaign.
Riley Pearson, six, has Smith Magenis Syndrome, to mean he has severe behavourial problems. Along with his dad, Mick, he has become the face of the fundraising bid by Jeans for Genes.
The online campaign #dreamsforgenes aims to encourage schools on September 22 to sign for up for Jeans for Genes Day when pupils wear jeans in exchange for a small donation to the charity.
The short video by Riley and Mick, 39, raises awareness around the syndrome and genetic disorders generally.
Mick explains: “Our dream for genes is that SMS can become more socially acceptable and that more awareness is spread throughout public places – so people understand more in schools, hospitals, doctors or even Tesco’s.
“Riley is just gorgeous and is often a very happy little boy. We all adore him.
“However, if he gets over stimulated, that leads to a tantrum or, in a worse case, a meltdown.
“Riley will throw things, hit out at us and run screaming around. This is when people tend to look and judge us.
“He can start self-injurious behaviour – biting himself, pinching himself. It is hard enough dealing with Riley and worrying about him.
“So, when people give you nasty looks – like you are bad parents – well that is just something we don’t really need.”
Smith Magenis Syndrome is also characterised by mild to severe intellectual disability, delayed speech and language skills, distinctive facial features, heart and kidney problems, and substantial sleep disturbances.
Riley was diagnosed on December 4, 2014, when he was three years old. Doctors initially said he had Global Developmental Delay because he had missed all his milestones.
But rail track quality worker Mick said: “We just knew there was more to it. We have three older sons, so we are qualified parents.”
It took three weeks for the results of a genetic test on Riley to come back. Mick and his wife, Sue, a part-time health care worker, felt totally abandoned.
The doctor who saw them knew nothing about the condition. It was only when Mick found out about the SMS Foundation the family received support.
Riley lives with his parents, Sue’s mum, Pauline, 71, and his three older brothers, Ethan Ling, 16, Joshua Ling, 15, and Brandon Pearson, 13.
“The boys are brilliant with Riley. His condition affects the whole family on a daily basis but they adore him,” said Mick.
“They knew when they need to leave him alone and they all just think the world of him. The other side to Riley is just gorgeous. He is so loving and happy.”
Register for Jeans for Genes Day at jeansforgenesday.org
The Story Behind the New SMS Foundation Logo