Morquio syndrome

HOLLYWOOD history is full of child stars. Shirley Temple won an Oscar at the age of six, Jodie Foster got her onscreen break when she was eight and Macaulay Culkin became a teenage millionaire through the Home Alone films.

Ian Michael Smith is next in line for stardom. At the age of 11, he plays the title role of Simon Birch in Disney's adaptation of the John Irving novel A Prayer For Owen Meany.

His performance has drawn warm reviews from critics in America a remarkable achievement given that he has never acted before. But the feat is even more impressive since Ian suffers from morquio syndrome, a condition that causes dwarfism and leaves him in constant pain.

The theme of the film is that Simon believes God has put him on earth for a purpose, to be a hero.

And in a remarkable case of life imitating art, Ian is proving to be a champion of short people, showing society that they are not figures of fun or people to be afraid of.

"I'm happy this will show people you can do whatever you want when you put your mind to it," he said. "I'm happy that the role shows dwarfs are just normal people. We do normal things. We have normal friends."

When he was born in 1987 in Elmhurst, Illinois, Ian appeared to be a perfectly healthy baby.

Morquio syndrome, a rare enzyme disorder that affects the muscular, respiratory, circulatory and skeletal systems, was diagnosed when he was three. Bones, ligaments and joints develop abnormally and Ian had to endure painful months in hospital after undergoing surgery.

At the age of five, he had a spinal fusion. He had two bilateral osteotomies, in which doctors sawed through each of his thigh bones above the knee and straightened them with metal pins. At the moment, his hip sockets and ankles are weakening, causing him serious discomfort.

Despite his medical condition, Ian excels academically and is in the gifted education programme at his school in Elmhurst. He takes piano and trumpet lessons, sings in the school choir, navigates his own 8ft dinghy and competes every summer in the swimming competition of the Dwarf Athletic Association of America's National Games. His favourite book is The Hitchhiker's Guide To The Galaxy. Ian's parents - Steve, who has his own consulting firm, and Gayle, a music teacher - had no intention of introducing their son to acting. But when they were urged to put him forward for Simon Birch and read Owen Meany, they agreed it was perfect for their little boy, who was desperate to play the part. The family - including Ian's five-year-old brother - upped sticks and went on location for four months.

Simon Birch is the story of two outcast friends growing up in a small American town. Joseph Mazzello, at 14 another child star, plays Joe Wenteworth. Writer and director Mark Johnson said: "While Simon is looking for his reason to exist, Joe is looking for his absentee father. It's a story of two boys who are both on a quest and how their fate intertwines into the ending of the movie."

Ian became a huge favourite with the film crew during the making of the movie. Affectionately named "hot stuff", they had to be careful working with him because his bones are so fragile. But the 11-year-old was as boisterous as a healthy child, whizzing around the set on his motorised three-wheel scooter and selectively listening to instructions during rehearsals. "He wears two hearing aids so he heard what he wanted to hear," said the director wrily.

Johnson was thrilled with the little boy's performance. "He breaks your heart and lifts it at the same time," he said.

Little People of America, the highly respected campaigning organisation, said Ian's "normal" role in Simon Birch is a welcome departure for dwarfs who are normally treated as the gag act in films. "This picture will show the public that it's not what you are but who you are," said spokesman Billy Barty, 73, who has appeared in more than 200 films.

Hollywood's latest child celebrity is not sure he wants to remain an actor and thinks he may be a lawyer when he grows up. Meanwhile, he is on a tour of America promoting the film, which means he has missed the first few days of the new school term. The film company has provided him with a tutor and every day he emails his classmates back home, telling them of his latest adventure.

To them, Ian Smith is definitely a hero. in New York

Copyright 1998
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