Can anyone save our Daughter? Why we have gone to the Media to find Help for Hana + Links

imageJust in case you’ve missed my busy Facebook page over the past few days, I’ll put the Television and Newspaper links up here.

My husband and I decided to go public (well, more public than this cosy little corner!) to find help for Hana.

Ten months after having her tumour removed, Hana is morbidly obese, this has occurred due to broken metabolic pathways in her brain after her tumour was removed in January. So far, no one in her care team has put forward a strategy/action plan to combat this condition – “Hypothalamic Obesity.” Her condition is rare and so we do not expect to find a World Expert here in Sydney  or Australia (there is no research coming from here on that condition) however we do desire a specialist to ‘do their homework’ and perhaps consult with leading international experts in this field (so far, my husband and I have been doing this)  before devising a treatment plan with us. So far  we haven’t found anyone willing to do this. Waiting to see a new specialist can take four months – and consults are often focused around Hana’s complex hormone replacement requirements, since these are immediately life threatening and it seems that the Obesity is viewed as lower on the list of priorities.

imageThings are getting crucial. Hana’s physical disablement from her weight gain is severe. She has also developed sleep apnoea. She is Insulin Resistant and I therefore anticipate the development of Type 2 Diabetes in the next few months. It is also thought that she has a fatty liver.

I am losing my daughter little by little, every day.

We what need is a PLAN. We most likely need to try a couple of medications (we are advised that these probably won’t work/won’t help and will have undesirable side effects) then we need to start discussing Bariatric Surgery (lap banding, sleeve gastrectomy or the Vbloc). The media is helping us to get the message out there in hope that someone comes forward offering their help.

Sunday 12th October was a big day with Hana’s story making the front page of the Sunday Telegraph, Channel Ten news got in touch shortly after 9 a.m, came over to film at lunch ready for the evening news meanwhile the Daily Mail also requested an interview and photos Sunday afternoon. This is how they have helped us so far:

imageChannel Ten News

Sunday Telegraph

Daily Mail

 

 

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  9 comments for “Can anyone save our Daughter? Why we have gone to the Media to find Help for Hana + Links

  1. Lisa Harmer
    October 20, 2014 at 10:58 pm

    Hi Naomi,

    I read your story in the paper. How strong you are. As a mum myself I can’t begin to understand what you guys go through everyday! I’m also a freelance feature writer. Would you like to tell your story for a women’s magazine. I have one interested already. Please email me on lisaharmer (at) outlook dot com if you’re interested in chatting.

    • Naomi R Cook
      October 20, 2014 at 11:45 pm

      Thanks Lisa – not particularly strong, just driven, so many desperate mums are the same. I’ll message you back via your Facebook msg r.e the magazine. Thanks for touching base here 🙂

  2. March 13, 2016 at 10:52 am

    Hi Naomi,

    I watched a Ch 7 program about your daughter misfortune tonight and wanted to share some news with you as follows:

    – Few weeks ago I watched Polish News on SBS, I’m Polish, where it was reported about the girl in Poland who could not stop eating. She, as your daughter, got a severe problem with her brain and could not stopped eating and as a result she was very obese.
    The girl finally was taken to the hospital for operation on her ….brain, where the surgeons implanted some ‘device’, sorry I don’t remember exact name for it, which replaced damaged part of the brain responsible for regulating hunger. Immediately after operation the girl …stopped asking for more food and was very happy.

    If you were interested in the above story of the girl in Poland, who as your daughter had similar, maybe the same, condition I will contact Polish TV to find out at which hospital in Poland the doctor conducted such an operation for you to follow up further??

    Please advise.

    Kind Regards,

    Waldemar

    • Naomi R Cook
      March 13, 2016 at 10:55 am

      YES!! Please do, we’d love love to hear more!!

      • Naomi R Cook
        March 13, 2016 at 10:56 am

        (You can message me via my Facebook page, THANKS XX)

      • March 13, 2016 at 10:38 pm

        Hi Naomi, What city are you from? Waldemar

        Date: Sun, 13 Mar 2016 10:56:26 +0000 To: wkruk@hotmail.com

      • Naomi R Cook
        March 16, 2016 at 2:15 am

        We are in Sydney, as requested I haven’t published your posts with email details. Thank you for doing this, I’m very interested to investigate this incredible option. My Facebook messenger system is private but my official email, if you’d prefer is nursenaomipress (at) outlook (dot) com

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