Toby aiming for musical success

Kelly Ott with her son Jamie, 17, who has bilateral anophthalmia GC6416

Jamie has had a piece of his music published by the RNIB GC6416

First published in News by

Teenager Toby Ott was born with rare condition bilateral anophthalmia which means he has no eyes - but this has never been a bar for the would-be musician and composer. Reporter SAMANTHA PAYNE finds out more.

KELLY Ott had no idea her child was anophthalmic until she give birth to him at Queen Mary's Hospital, Sidcup, on June 15, 1989.

The 48-year-old admits she was initially shocked by the news, but she and her husband Barry were determined to be positive.

The incurable condition affects one in 100,000 births, with the majority of cases genetic and others believed to be caused by environmental factors.

It means the sufferer has eye sockets but no eyeballs.

The couple adapted to bringing Toby up in a different way.

We felt a little alienated as we didnt know anyone else who had children with the same condition.

KELLY OTT

To alert him to the fact it was feeding time, his bottle had cat bells on it.

Mrs Ott said: "When you are pregnant it's like preparing for a holiday.

"You think you are going to Spain and you need a bikini but instead you go to Amsterdam and need a sweatshirt.

"It's not what you expect but you adapt."

The couple found there was a lack of information and support.

So they helped set up the charity MACS (Micro and Anophthalmic Childrens Society), in 1993.

Mrs Ott, who is a deputy headteacher at Waterside School, Robert Street, Plumstead, said: "Toby's condition had never been heard of before and we felt a little alienated as we didn't know anyone else who had children with the same condition.

"This is why we got involved with setting up MACS; to give other parents who had children with microphthalmia (small formed eyes), and anophthalmia (no eyes) the opportunity to meet and support each other."

Toby, who is now 17, has taken the condition in his stride.

Mrs Ott said: "Toby does not want to see.

"He is as afraid of seeing as we are of going blind."

Toby has prosthetic eyes.

Day-to-day he uses a cane and communicates using a talking mobile and a braille laptop.

His condition has not held him back from pursuing his love of music and he is able to read music in braille.

Since the age of four he has attended The Blackheath Conservatory of Music and obtained a distinction in theory and a merit in practical play in his grade one piano exams.

He was in the top five pupils of his class at Invicta Primary School, Invicta Road, Charlton, and went on to gain seven GCSEs at Crown Woods School, Eltham, including an A grade in music.

The Charlton fan is currently in his second year at the Hereford Royal National College for The Blind (RNIB) in Hereford studying music performance.

He is also studying history A-level, GCSE maths and music composition at Hereford Sixth Form College.

Toby, who lives in Zangwill Road, Shooters Hill, has even had a piece of his music published by the RNIB in Braille and performed at Handle House in London by a string quartet.

He said: "I have always got on with my life. It's never been an issue.

"I hope to get into the music industry and compose for PlayStation games, plays and films."

  • Research from Moorfields Eye Hospital, east London, in October 2004, states on average 30 to 35 babies are born each year with microphthalmia (small eye syndrome) and anophthalmia.

For more about the charity, visit the website macs.org.uk.

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