All they need is love

The Aucklander

All they need is love

LAURA, FRONT, WITH BIG BROTHER SAMUEL AND SISTER ALANA - PHOTO: KELLIE BLIZARD (Source: NewsPix)

Debrin Foxcroft meets the amazing Blow family who are overcoming enormous challenges
positively

At the finish line, there was a tall, smiling boy welcoming competitors. At almost 2m, 13-year-old Samuel Blow towered above the participants inf the Cure Kids Great Adventure Race.

But he's not running. Despite his strapping stature, too much physical activity could seriously hurt him.
Samuel has Marfan's syndrome, which affects the skeletal system, heart, eyes and skin.

His sister, Alana, also has the disease. And his mum. His uncle and grandfather died from causes related to the congenital disease.

Another sister, Laura, has Down syndrome and has been diagnosed with leukaemia.

This is a family that has faced enormous challenges from the outset, but they have come away laughing.
Hannah and Chris Blow, of Pakuranga, knew the risks of having children before they were conceived.

``Marfan's is a dominant gene,' explains Mrs Blow.
``There was a 50 per cent chance the children would inherit it.'

She cannot imagine not having the children.
``I decided, for me, that Marfan's wasn't going to be a problem.'
She knew that if her children were born with the syndrome there would be annual heart monitoring and the likelihood of open heart surgery. But they would be a family and that, in itself, was enough.

``I think it's hardest for the boys (in general). They are not allowed to play sport.' Because of his height, Samuel is regularly asked if he is on a basketball team.
``He is forever saying, `No, I'm not allowed'.'

Laura, who is now six-years-old, was a curve ball.
At 28-years-old, Mrs Blow wasn't in the risk group for Down syndrome. Then there was the 2006 diagnosis of leukaemia.

``She had been sick for a little bit but, even if you suspect it, it's still devastating.'

Of four children, Emma, who is nine, is the only one without Marfan's or Down syndrome. But that doesn't make life easier.
``Poor Emma. It's not easy being a sibling.'

And, while this year, Emma was looking forward to a
busy year of school, ice skating and other activities, she has just been diagnosed with glandular fever.
If it's not one thing for this family, it's another.

Mr Blow took time off work because of stress last year and was recently diagnosed with ulcers.
Meanwhile, Laura had a stress fracture in her left ankle which is now in a cast.

``We survive everything by not looking back and we have learned to enjoy the moments. The kids know that they are different but they don't let it stop them.'

Mrs Blow admits to having lost some empathy for the problems other people have with their children, particularly as Laura has undergone so many surgical procedures.

Parents have come to her, worrying about their child's first experience with anaesthesia.
``Our reality is that I just don't have time to worry. When the kids are at the doctors or Laura needs surgery, I think, `it just has to be done'.'

This family, however, is anything but sealed indoors by their difficulties.
As well as activities such as theatre sports and Sea Scouts for Samuel, Brownies for Emma and Pippens for Alana, the children are all involved with charity groups such as Cure Kids.

They are ambassadors for the organisation, and attend events like the recent Great Adventure Race through the Waitakere Ranges.
At the April gathering, $590,000 was raised boosting Cure Kids research efforts.

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