A knitwear designer is holding a charity fashion show to raise money for the extremely rare disorder her grandson suffers from, characterised by laughter, energetic movement, hugs and a fascination with anything shiny.
Among other challenges children with Angelman Syndrome (AS) are prone to debilitating seizures, can’t speak and experience motor difficulties.
But despite their struggles the children are also indefatigably joyful and loving.
The syndrome does not reduce life expectancy but those with the condition will always need round-the-clock care.
Until recently, it was a little understood disorder and often misdiagnosed as Cerebral palsy or autism.
Joanna Marcella, from Hackney, is putting on a creative arts event this Sunday at the Hackney Picturehouse to raise money for ASSERT, the Angelman Syndrome Support Education and Research Trust.
Her grandson Manasseh was officially diagnosed at Great Ormond Street Hospital when he was two years old.
She is following in the footsteps of Total Recall actor Colin Farrell, who raised awareness of the condition when he shared the news his 12-year-old son James is affected.
“As a celebrity he is able to catch the attention of the media with the story of his own son,” said Joanna.
“I too am extremely passionate about this cause and want to do all I can to raise awareness for angels like my grandson.
“All parents who have a child with Angelman say they are a joy, obviously they wish they had a regular child but it is a joy to have them because they are very funny themselves, they laugh a lot and they find a lot of things funny, they can be little comedians.
“They love water and shiny things, I don’t know why, maybe it is because they are non-verbal and can’t speak in sentences, anything where they can use their vision and touch is heightened.
“Children with Angelman syndrome are very good at communicating what they want even though they are non verbal, my grandson will talk to you and tell a story laughing, but you don’t know what is going on, sometimes he will use odd words and he mimics a lot.”
The event this Sunday will feature fashion shows and performances from rapper and musician Funky DL, the band High Rise Five, singers Ina Shai and Ramone Chambers and Afrobeats rapper Dola-Billz.
It starts at 7pm at the Hackney Attic and Bar, in the Mare Street cinema and costs £10 in advance and £15 on the door.
It will feature fashion shows and performances from rapper and musician Funky DL, the band High Rise Five, singers Ina Shai and Ramone Chambers and Afrobeats rapper Dola-Billz.
Buy tickets at www.picturehouses.com.
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