Just found out Aurora has Mitochondrial myopathy
Southland
Hello my name is corrina and my Husband Michael we have an amazing bright beautiful wee girl named Aurora .She is going through a lot of tests at the moment. Aurora needs to go to Starship To find out why she isn't growing ,We are waiting on the referral .She hasn't gained weight or height since she was about 3 She is now 5 They are thinking mitochondrial but not sure, She is getting weaker and has days where she can't use her arms .Her walking distance has halved. We need answers she has gone down hill a lot in the last 2months Also she needs a diagnosis for her eyes as everyone that has been sent a copy of her scan in nz and Australia can't put a name or cure to it they are deteriorating fast especially her left. We would love to raise enough money so her dad can come with us to starship she has been referred for her eyes in 2-4weeks and soon for her lack of growth and deteriorating strength.
I'm involved because I'm her mum and I really need and want her dads support for both of us so we can get some answers
some news 27 March 2015
I would like to say a huge Thank you to the amazing people that have donated so far. Your generosity is amazing. We have had a couple more hospital appointments. They are now referring to Auroras eyes as having a cobblestone effect which they haven't seen in children before. Yesterday she had an xray of her left hand this is meant to tell them if her bones are at the right size for her age. I spoke to a lovely lady on smiledial and she has us now looking into BVVL disease .Can't wait to get to starship to get some more answers .
Thank you very much for your kindness .It is very much appreciated. We are so lucky to have supportive people around us
Thank you so much .We have a long road ahead and the lovely doctor on 60 minutes was also Auroras doctor when she gave us the diagnosis we got told to watch that to see what the future holds. Was a total reality shock to think our beautiful little girl will be that ill .
Wow we are totally overwhelmed wish we knew who u were so we could give a massive hug .And personal thank you ??
Thank you so much Sue .We are so grateful .will keep you upto date
Hi Mike .Thank you so much for your support .It is much appreciated.be great to catch up one day .
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