Residents rally for boy with rare disorder

Last updated 10:59 20/03/2013
Theo de Heer
OFF TO SEATTLE: Theo de Heer will soon meet children who have the same rare genetic disorder as him, Nager's syndrome.

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"Mummy will there be boys there like me?"

That's what 5-year-old Theo de Heer said to his mother Sarah when she asked if he wanted to go to a conference in the United States for people with the rare genetic disorder, Nager's syndrome.

The Christchurch boy is among 120 people in the world who have the disorder, and the only person in New Zealand.

As a result of the condition, Theo was born with his lower jaw too small and required a tracheostomy to breathe as his tongue, of normal size, blocked his airway.

His breathing device was removed last November after operations over the years have successfully enlarged his lower jaw.

It is not yet known if he will require further surgery to his jaw as he grows.

The disorder has also affected the development of his hands and arms, impaired his hearing and speech.

De Heer said the conference would give Theo a chance to be around other children like him.

"It must be quite lonely knowing you're different. For him he's the only one in New Zealand like this. He's the only one who looks like himself ... Now he's become more aware of other people around him he's started noticing the stares and kids pointing and saying 'you look weird, what's wrong with you?'

"For him to be able to go to this, he'll know he's not the only one. There'll be other kids there that look like him. Some will have tracheotomies, others hearing aids and lost fingers."

De Heer said weeks ago her and husband Anthonie were not even sure if they could save up enough money for them, Theo and their other son Codie, 3, to go to the conference in Seattle in June.

But their fundraising efforts "snowballed" after More FM Breakfast hosts Simon Barnett and Gary McCormick heard of their plight.

More than $30,000 has been donated to the family's cause after the couple shared their story on air.

De Heer said she was shocked by the generosity from complete strangers.

"This is a story I haven't really told to anyone other than close friends and family. It's been really, really hard. I didn't expect so many people to identify with what we're going through. It's been completely overwhelming."

De Heer said while Theo was now able to breathe normally and his eating, supplemented by a tube to his stomach, had improved he would still require further operations "to help him live as normal a life as possible".

The Van Asch Deaf Education student would undergo surgery next month to repair the hole in his throat from the removal of his tracheostomy tube.

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- The Press


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