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Jayden's song of hope
DOCTORS said little Jayden Clark would only live to two-years-old.
Now he is three-and-a-half and has had a song about him in the top ten of a music chart.
Jayden was born with a rare form of epilepsy called West Syndrome or infantile spasms and he is still unable to sit up on his own.
His dad, Josh Clark, or Remedysounds, a singer songwriter from Shirley, wrote Jayden’s Song to raise awareness for the condition.
And on the day of its release, it had already reached number ten in the iTunes singer songwriter charts.
Josh also hopes his music will help him raise enough money for Jayden to go to the United States to have life-saving brain surgery.
The condition affects one in 5,000 babies and is normally diagnosed within the first year of a child’s life.
Around five per cent of children with West Syndome do not survive beyond five-years-old and many who do survive, suffer with epilepsy and learning disabilities throughout their lives.
Now Jayden is on a cocktail of 50-100 pills a day and regularly has to stay in hospital for weeks at a time.
The song talks about Jayden’s parents’ experience waiting for him to be released from hospital and expresses Josh’s fears as a father that his son might not have as easy a life as a healthy child.
“You never ever think it will happen to you,” says Josh, 24.
“They said he’d only live to two years old.
“It was written about 18 months ago, when Jayden was first diagnosed with West Syndrome.
“We’re just trying to raise awareness for West Syndrome.
“He’s getting to the age now that people look at him and think there’s something wrong with him. “We want to send him to the States for treatment.
“He has spent more than half his life in hospital. His immune system has deteriorated and he keeps getting pneumonia.”
Josh admits that he fears for his son’s future.
“I don’t know how much longer he can go on like this, so that’s why I need to get him to the States as soon as possible,” he says.
“I wrote Jayden’s Song at a time when I was suffering from real emotional distress.
Music is the best way to come to terms with hard times in my opinion, and I wanted to share my experiences with my audience through this song.”
- Josh has organised a gig to raise money for Jayden tonight at the Joiners in St Mary’s Street, Southampton.
S1mple and Luke Marsden will join Remedysounds on stage from 7pm at the event that will bring Jayden a step closer to having life saving brain surgery.
Remedysounds will also be performing at Brookfield Community School in Sarisbury Green on February 14, at The Wedgewood Rooms in Portsmouth on February 10 and in Bournemouth on February 11.
Among the artists joining him at each gig will be Luke Concannon from Nizlopi, best known for the JCB song.
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