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Leah's Story

  • Update for 15/07/2013

      15 July 2013

    Time for a much needed update. May wasn't a very good month for Leah. She had surgery for a mickey to be put in her tummy (for feeding) and while the surgery went pretty well, Leah reacted badly. Her seizures came back with a vengeance and she picked up an infection which then lead to a small bout of pneumonia. After several nights in hospital, our strong little girl got better and after a few weeks the seizures dropped right down again. Since then, Leah has been pretty good. She has become quite vocal and enjoys eating her first stage solids. Leah has started conductive education where she does exercises, listens to music and does all sorts of fun early-developmental educational activities. She really enjoys herself but soon gets tired and falls asleep. Leah and her mum Brenda have been going to the hydrotherapy pool at Te Rapa with Leah's little friend Wiremu and his mum. Leah loves it and kicks around with her floating neck ring. So things are pretty good at the moment. Leah goes in to hospital later this week to finally get her mickey completed and her nasal tube taken out - yay! Here's hoping it all goes well and the nasty winter bugs stay far far away!

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  • Underlying cause

      9 May 2013

    After Leah's first seizure, the frequency of her seizures increased until they were almost continuous. We were first admitted to Waikato hospital however after a particularly bad night where Leah stopped breathing every hour, she ended up in ICU and was flown to Starship the next day. At starship the investigations to find the cause of the seizures began. They decided to test her for everything they could think of. In the first 24 hours in Paediatric intensive care, Leah had blood tests, urine tests, several lumbar punctures and an EEG. A few days later she also had a MRI and muscle biopsy. The MRI showed damage to Leah's basal ganglia and brain stem, indicating a metabolic disorder, probably mitochondrial. It was at this stage that we were give the worst news any parent could image - it's not curable and life expectancy is short. This was unbelievably hard for us to hear. But we had amazing support from our families (at this stage our friends didn't know). There was one day on the ward when Leah had 35 visitors, more than the staff nurse on duty had seen before!! What is a mitochondrial disease? In every cell in the body, Mitochondria are responsible for producing energy (called ATP) that the cells needs to function. Our cells do not function properly if they do not have enough energy - this is known as Mitochondrial Disease. The most common parts of the body affected are those that have the highest energy demands; brain, muscle, liver, heart and kidney. If a lot of Mitochondria in the body are affected in the important body organs, like the brain where Leah's mitochondria appear to be affected, Mitochondrial disease can be very serious. While Leah's severe form of epilepsy is very rare, mitochondrial disease is not as uncommon as you would think. This is surprising as many people have never heard of it. Mitochondrial disease is very hard to diagnose so is also probably under diagnosed. More detailed information about mitochondria disease can be found at: http://www.emdn-mitonet.co.uk/questions.htm

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  • Thanks again

      7 May 2013

    Just want to say a huge thank you to everyone for the amazing generosity, aroha and messages of support you have all given us.

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  • Thanks

      5 May 2013

    Brenda and I just want to say a big thank you to everyone that has donated and shared our story so far. We plan to share a bit more of Leah's story on this page and add updates from time to time. <3 Sam, Brenda and Leah

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