Monday 27 March 2017

I'm 8, I've got spina bifida and I can do everything...

Shane Barker won't let his illness slow him down, says Celine Naughton

Yes, we can: Shane with his family at home in Donabate
Yes, we can: Shane with his family at home in Donabate

Celine Naughton

For someone who just turned eight this month, Shane Barker has packed a lot into his life so far.

He's had his photo printed on a commemorative stamp, is featured in a glossy book called Extraordinary Lives and on St Patrick's Day, he went off to Áras an Uachtaráin to meet the President. Not bad for a boy whom doctors presumed at birth was "unlikely to have a very good quality of life".

"Looking at him now, happy and healthy and always in the thick of things, I think how wrong it was to say that," says his mum Theresa. She clearly remembers the shock of being told eight years ago that the baby she was carrying had spina bifida, a condition in which the spinal column fails to form properly.

Instead of taking her baby home, Theresa had to spend the first three months visiting him in hospital as he underwent delicate surgery to correct the defect.

"I'd be with Shane in Crumlin Hospital during the day and at night I'd come home and express milk with a picture of him in front of me," she says. "The first few weeks were traumatic, but as his progress continued, my husband Nick and I decided to be positive and get on with our lives."

And that positivity has continued unabated as Theresa embraced a 'Yes, we can' attitude years before Barack Obama made it a global catchphrase. Now Shane enjoys a quality of life equal to that of his brother Adam (9) and sister Grace (4).

He is in second class in the local Educate Together primary school where his favourite subjects are art and music. He's a Bon Jovi and Jedward fan, supports Aston Villa, goes swimming twice a week, plays basketball and is learning to play the piano. He also plays goalie or referee with Adam and their friends on a large green area in front of their house.

"I try to instil a 'can do' attitude in Shane," says Theresa and turning to her beautiful boy adds, "What do I always tell you -- you can do anything but . . ."

". . . I might just do it in a different way," says Shane, moving effortlessly from his wheelchair to the sofa in their home in Donabate, Co Dublin.

"I want Shane to be on top of his game," adds Theresa. "There are times when onlookers might wonder why on earth I won't get the chair for him if he's using his crutches to climb a few steps, for instance, but I know he can do it and I want him to know that he can, so I'll stand back and say, 'You're nearly there!'"

During a spelling test at school, Shane was asked to incorporate the word 'mother' into a sentence and he wrote, "My mother is strict."

"I thought, 'Oh my God!' But I drive him on because I always have the endgame in sight," says Theresa. "I want him to have the same quality of life as other people and I hope that even if he doesn't see it that way now, he'll understand and benefit in the long term."

It's not always easy. So far he has had six operations to correct some of the effects of the condition and has borne each one with stoic fortitude. Occasionally, he has said he wishes he could walk -- and even then the Barker family positivity has kicked in as his brother Adam replied, "But Shane, you're much better at swimming than I am -- and you never have to queue at DisneyWorld!"

This extraordinary family have shone their light beyond their own hall door too. In an inspired initiative, Theresa gathered a number of old wheelchairs from the Swifts Sports Club run by the Irish Wheelchair Association (IWA) and gave them to the school.

"It gives other children a chance to feel what it's like to be in a wheelchair and Shane doesn't feel like the odd one out," says Theresa. The wheelchairs proved so popular, there's now a rotation system in place and children have to request a tag to use one. "The Wheelchair Association has been fantastic," she says. "It's a marvellous support for us as parents and when we take Shane to sporting or other events run by the association, he sees older people in wheelchairs driving their own cars and leading independent lives and they are great role models for him."

The future is full of hope for this remarkable boy who wants to be a policeman when he grows up and a grandad by the age of 58.

"It wouldn't surprise me," says his mum. Nor any of us.

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