A MUM will take to the streets of Barnsley next month to raise awareness of a life-limiting syndrome that causes her son excruciating pain.
Becky Parkin, 38, has three children - ten-year-old Cohen, eight-year-old Brax and four-year-old Rafi - who all have medical conditions.
Her eldest, Cohen, has been diagnosed with autism and Ehlers-Danlos syndrome - a group of rare inherited conditions that affect connective tissue.
Connective tissues provide support in skin, tendons, ligaments, blood vessels, internal organs and bones.
There are several symptoms including an increased range of joint movement, stretchy skin and fragile skin that breaks or bruises easily.
Cohen struggles with fine motor activities and writing as his hands are weak and his fingers pop out of his socket, causing him pain - something which impacts just one in 40,000 people.
Becky, from Shafton, told the Chronicle: “My eldest has been diagnosed with EDS but my two youngest haven’t been fully diagnosed yet.
“It’s a genetic condition and Cohen’s joints dislocate a lot for no reason.
“He also has a lot of migraines and gets pain in his stomach.”
Despite his life-limiting syndrome, Becky says Cohen is incredibly smart and bubbly - and she feels he’s lucky his condition isn’t worse than it is currently.
“He can’t read and write because his fingers pop out of his sockets but he’s still really smart,” she added.
“He’s hardly ever complaining about the pain he goes through and it’s not often he comes to me to ask him to relocate his joints as he can do it himself now.
“He’s a really bubbly and friendly lad who is always sat talking to strangers - if you looked at him you wouldn’t be able to tell anything was wrong.
“Some types of EDS are really life-limiting and so in a sense he’s really lucky in terms of growing older.
“But as he grows up it will be harder for him to go about in every day life - he’s currently at a mainstream school but when he goes to secondary school that won’t be the case.”
May is Ehlers-Danlos Syndrome Awareness Month and Becky wants more people to know about the illness, rather than just ‘stopping and staring’ at her son.
“It was an absolute nightmare to get people to understand it,” she added.
“We really had a difficult time getting him diagnosed and we had to go private.
“It’s a chronic pain condition and we want to raise awareness of it so we can get people the help they need.
“We’re wanting to make it better for my boys as they get older.”
On May 13, Becky’s 39th birthday, she will walk into the town centre dressed a zebra - the Ehlers-Danlos Support UK charity mascot - to raise funds and awareness.
“We’re going to be going on a ‘dazzle walk’,” she added.
“I’ll be dressed in an inflatable zebra costume and my sister will be there too.
“We were looking to raise at least £100 and we’ve nearly done that without any promotion in a day.”
