Tarja Kelly, of Lennox Head, with her three boys, from left, Matthew, 5, Nathanael, 20 months, and Sebastian, 5. The family wil
Tarja Kelly, of Lennox Head, with her three boys, from left, Matthew, 5, Nathanael, 20 months, and Sebastian, 5. The family wil

Future is bright for the kids from the Kelly gang

By Jane Gardner

FOUR children under five would be enough work for any parents ? but what if three of those kids suffered a rare genetic condition requiring constant care?

Meet the extraordinary Kelly family from Lennox Head.

Matthew, 4, Sebastian, 5, and Nathanael, 20 months, were born with a limited ability to produce sweat, severe allergies and have poor immune systems. The boys have been in and out of hospital since birth and have only limited access to the outside world.

If they get hot, they could literally suffer an organ meltdown. Their sister Siobhan did not develop the condition, called Hypohidrotic Ectodermal Dysplasia (HED), because it is generally prone in males.

Despite the constant challenges, like remembering the myriad of foods the boys cannot have, mum Tarja and dad Greg handle their tough situation with grace and humour.

For their perseverance and selflessness, the family are being honoured by the Our Kids Foundation at this Sunday's Our Kids Day Out in Ballina at the Missingham Bridge Amphitheatre.

For Tarja, the childrens' ward at Lismore Base Hospital has been a godsend.

"It's fantastic. Now we go in and everyone knows us. They say 'which one is it this time?'" she said.

"As soon as they get there, the kids make a bee-line for the play room and it's become almost like a family trip."

The boys' health problems are easing as they get older and Matthew is now in pre-school and Sebastian is at primary school. The other kids know about their condition and keep an eye out for any signs they might need help.

The Our Kids Day Out is a fun family day recognising the fantastic work the charity does. This year, bring the family to the Missingham Bridge Amphitheatre, between 9am and 2pm, to catch the entertainment including the Ronald Macdonald Show, Lismore Larry, Reptile Awareness, NBN Big Dog, Rowan the Clown, Ready to Rock Dancers and much more.



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