Little Battlers: One family, two sick children

Last updated 05:00 08/02/2013

NO COMPLAINING: Storm getting treatment for JIA.

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This is a story about my daughter Dana and a family that is battling quietly to overcome the challenges life has thrown at them.

My name is Dana. My eldest son Zion is 13 years old and has a heart condition called Sinus Ventricular Tachycardia, which is an electrical fault in his heart that gives him cardiac arrest-type symptoms. It makes his heart race to 240 beats per minute when he overexerts himself. He needs surgery to right the faulty surge.

Zion lives to play rugby and he has been sportsman of the year at his Whangarei School three years running. His condition only came to light last year. Zi is the 'big brother' of our family, he looks out for everyone and encourages us to keep going. We never hear about his condition, or what he can't do, there's nothing he can't do, he wont let there be. His philosophy is if you're not doing what you love to do, there's no point in living. That is what he told the doctor who told him he couldn't play rugby anymore. He played the day after coming out of hospital, much to other parents' horror and mine. I try very hard to be a sideline mum but I don't think I breathed the whole game. Zi will be having an operation to correct the fault in the near future.

Zion's little sister Storm has just turned eight years old and was also diagnosed last year, but with Systemic Onset Juvenile Idiopathic Arthritis (JIA), which is an immune disorder where her immune system thinks her body is the virus and is trying to kill it. The first symptom is Arthritis, and the long-term prognosis isn't good.

There are only four people in New Zealand with the type of JIA that Storm has and she's the youngest. Currently she isn't responding to the medication so is trialling a new drug as of yesterday. She had to come off her pain medication yesterday because it was upsetting her stomach, so she's not a very happy little girl and isn't able to start the school term this week.

I'd like to say how proud I am of our little girl. She has been through so much in the last year. She never complains, she is always smiling and the first to help another in need. We attended a Christmas party for sick kids last year and there was another little girl with a similar disability to Storm. She was very upset about having sore legs, so Storm gave her a crutch and they spent the day together with one crutch each. I was a very proud mum that day.

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Dana's wedding was postponed after finding out about the kids' illnesses and Dana lost her job due to the need for her to take Storm. Dana's mother Sharon, who submitted this article, has started a page on 'Givealittle' for Dana's family to fundraise towards the children's medical costs and to help ensure Dana's wedding goes ahead while Storm is still with them. 

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