Maggie's lyme disease

http://workswondersnz.blogspot.co.nz/2013/02/the-tick-that-turned-life-upside-down.html

SUNDAY, 17 FEBRUARY 2013

The tick that turned a life upside down

Ruby and best mate Maggie.

By Angela Bensemann

When I first met Ruby she was about four-years-old, throwing the rugby ball around, taking part in her big brother’s training – Dad was the rugby coach.  Full of life, Ruby was up there with the best of them.  A couple of years later Ruby was joined by Maggie the chocolate Labrador pup and the two became inseparable.

But then life took an unexpected turn.

The family had a trip to Australia – nothing unusual in that, most New Zealand families head across the ditch at one time or another.  Ruby was seven at the time and the family did all the usual tourist things, taking in the sights and getting up close and personal with the wildlife.

Little did they know it at the time but a close encounter with a kangaroo was to change Ruby’s life for ever.

After patting the kangaroo Mum (Rachel) noticed a little black insect in Ruby’s hair – she pulled it out and thought little more of it.  And that was all it took.  The little insect was a tick.  And ticks are nasty.  They carry infections like Lyme disease (Borrelia) along with other co-infections (Bartonella, Babesia, Rickettsia) and you get them from a simple bite.

Ruby went from being active bright and happy to being unable to walk, count to 10 or remember her ABCs, all the while having to endure up to 70 life threatening seizures a month.

It took seven long months for the doctors to diagnose Ruby – you see Lyme disease is quite uncommon in New Zealand.

Ruby is now responding well to treatment, which she began in Australia in 2011. Treatment is very complex as her little body is also fighting a co-infection of Bartonella.

Along with Maggie, a back pack with oxygen and emergency supplies has now become Ruby’s constant companion.  Where she goes the back pack goes too.  Mum and Dad have adjusted their lives to revolve around Ruby’s needs – work schedules had to be revisited with Rachel giving up her nursing for the most part, external activities had to be curtailed.  Brother Sam knows more about seizures and medical terminology than any 12-year-old should have to.

Ruby has a great spirit and is bouncing back well but lives with a daily regime of intravenous antibiotics and occasional seizures.  The whole family remains on Ruby watch 24/7.

The other week Ruby turned 10.  She had a lovely birthday party with her friends and a giant water slide - time to concentrate on being a kid and forget about Lyme disease, for just a while.

The next step for the family is looking for a cure.  They have been instrumental in setting up the Ruby Red Trust to raise awareness about this disease in New Zealand and also to look for that cure.

Ruby is taking part in a case study; as will other patients as they come to light. It has been recommended, as part of the case study, that Ruby see a leading Lyme Specialist in the USA, where tick borne disease is more prevalent.

We decided that we’d like to help Ruby to get there so we’re holding our WorksWonders Charity Clothes Swap this weekend to raise money for the Ruby Red Trust.  If you can’t make it but would like to help the Ruby Red Trust visit their facebook page  and you can view a video of Ruby's journey here.


If you can make it we’d love to see you – Saturday 23 February 2pm-4.30pm, Pukerua Bay School Hall, Rawhiti Road, Pukerua Bay, Porirua. $10 entry fee plus bring along money for raffles and refreshments.