Brave boy defies SMA odds

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Mon, 30 Jan 2012 7:00p.m.

A genetic disease called spinal muscular atrophy, or SMA 1, takes the life of six New Zealand children every year.

Many New Zealanders might not have ever heard of it, but as many as 1 in 40 of us carry the gene.

Children with SMA type 1 become progressively paralysed, and there are no support groups or charities because most babies die before their first birthday.

Campbell Live met a remarkable boy who is defying those terrible odds. 

He’s being helped by a new medical tool that can give him a quality of life that only a few short months ago would never have been thought possible.

Watch the video for Natasha Utting’s full report

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Comments

14 Feb 2012 12:07p.m.

nikki wrote:

I wish you guys all the best since the operation,watched the story on campbell live.Definately hit home,Our son has Mitochondria IV,He also has severe scoliosis his spine is like a "C" shape,He also cant sit for long periods of time due to this,and other medical issues.he cant have the operation as it is far to risky for a few reasons,and being it is such a lengthy surgery.I would be keen on learning more about this as the operation above not being as long as the standard one they do.I have sent this link to our specalist. Anyway wish you all the best. Kind Regards Nikki

02 Feb 2012 04:52p.m.

Sonya Mischewski wrote:

I loved the story! im glad that people can get to know about syndromnes that are not 'popular'. My son has VATER syndromne and we know ruben from starship.VATER syndromne effects 16 out of 100,000 births. My son had the same surgery the week after Ruben so i guess that must make him number 6.John furgusson was his doctor also. He has had 7 sugerys altogether including spine, heart and thumb. I wish I has a sister in the industry to get our story out there. I wish them all the best and hope to see them on our next 'lengthening' visit.

01 Feb 2012 06:20p.m.

Khrystal Davis wrote:

Thank you so much for this story. Like Ruben, our son Hunter is also defying the odds as a SMA Type I warrior. Hunter turned 6 months old today! We are so excited to learn of Ruben's progress, and even more so to see what a happy and beautiful boy he is. Thank you so very much! Warmest regards, Khrystal Davis

31 Jan 2012 10:36a.m.

Glen Henry wrote:

Very moving story.Hope little Ruben continues to have a full rich life.God bless. I was watching this story with great interest.My daughter,now 14,had scoliosis surgery back in 2011.John Fergusson was also my daughters surgeon. What caught our interest was a comment made on how scoliosis sufferers once having had surgery had to return every six months to have their rods extended in their backs because of the body growing.This news was new to us as we were told no other surgery was needed and that in fact the spine of our daughter had been fused and would not grow. As you can imagine we are feeling quite a bit out of sorts.I will be talking to my G.P tomorrow.We haven't seen John Furgusson in almost a year,at our last appointment at Starship he didn't turn up,but I would like to here from him as well concerning this comment.My concern is if this is a option why weren't we given it.Does this come down to the almighty dollar.Most likely I think. Look we are hugely grateful to John for what he did for us.Make no mistake.My concern is was everything done.We too are just concerned parents. Yours sincerely Glen and Faith