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Brave Iris - In Memoriam

  • Iris Update

      6 August 2023
    Posted by: Nicolas Zubok

    To all my friends

    Thanks again for all the prayers and good vibes during Iris journey but unfortunantely we lost her last night.

    She was calm and peaceful when her heart stopped at 11.01pm on 05/08.

    Michele and I will need some time for ourselves but we are fine. We will reply all the messages received as soon as we can

    Once more, thanks for all support and donations. We know that Iris was so loved by you all.

    Nicolas

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  • Iris Update

      4 August 2023
    Posted by: Nicolas Zubok

    Hello to all

    We are still here. After 12 days of her colapse, we are reaching a point that she is not showing improvements.

    Her kidneys are still not working. The Dialysis is starting to not work as well. If she doesn't have a significant improvement probably she will not make it.

    Adding to this, doctors are planning to remove her breathing tube tomorrow. Due to her brain damage, it is uncertain if she will be able to breath by herself.

    All prayers for her tomorrow will be welcomed.

    Thank you all for the support.

    Nicolas

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  • Iris Update

      28 July 2023
    Posted by: Nicolas Zubok

    Hello all

    Thanks for the support and kind words that we are receiving.

    Iris is more stable now but the chances to not go through are still high. The cardiologist closed her chest today so the next 24/48h will be crucial to see how her body will react.

    Her liver and mostly her kidneys are not working well so the doctors are focusing on those organs now.

    The MRI results show that she has some brain damage but not too severe as expected which we think it is good news. We need to wait her recovery to understand how this damage will affect her day to day life.

    Please keep praying and sending good vibes to her.

    Nicolas

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  • Iris Update

      24 July 2023
    Posted by: Nicolas Zubok

    Hello all

    Unfortunately Iris health has deteriorated since Saturday and she is fighting for her life.

    Michele and I are with her in the hospital and we are relying on the doctors. The whole team is fully commited to revert her situation.

    We will be fine. We just need to give her some time and she will find a way to go through this.

    Thanks again for all the support and Hopefully We can give you good news in our next update.

    Nicolas

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  • Iris Update

      18 July 2023
    Posted by: Nicolas Zubok

    Hello my friends

    Unfortunately the surgery didn't happen today. In a random X-ray yesterday, doctors found out something that could be an infection in her bowel.

    As a precaution, they've decided to treat this possible infection first so everything has been postponed at least for a week.

    Hopefully she can recover well and things will go back on track.

    Once more, thanks for all donations.

    I will keep posting updates here

    Nicolas

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  • Iris Update

      13 July 2023
    Posted by: Nicolas Zubok

    Hello all,

    Just a quick update, Iris has been very unsettle the last couple of days. She had an ultra sound yesterday and they found two stones in her kidney. The stones are not a big issue because her kidney is not blocked but the doctors will treat her to expel the stones.

    Adding to this she has an infection caused by the catheter that she has in her bladder. The surgeons have decided to do a Vesicostomy so they will be able to remove the catheter and the drain that she has in her tummy.

    Basically they will create a channel through a tiny hole just below her waist. that will be able to drain her pee.

    It is a full surgery so all the prayers will be welcomed since she had her heart surgery only 2 weeks ago.

    They are planning to do the surgery on Tuesday morning 8.30am ish.

    Thanks again for all the donations and I will post a new update after the surgery.

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  • Iris Update

      10 July 2023
    Posted by: Nicolas Zubok

    Hello all,

    No big changes from.last update. She is still recovering from her heart surgery. But she is stable and all medications and pain killers have been reduced.

    For those who have questions about the Kabuki Syndrome, I am attaching a very educational video explaining some characteristics of this syndrome.

    Thank you for all the support. I will keep you all updated.

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  • Iris Updates

      6 July 2023
    Posted by: Nicolas Zubok

    Hello all, once again thanks for all donations and words that we have been receiving since our baby Iris was born.

    They removed her breathing tube yesterday and slowly are decreasing sedation. We hope that she can go to the cardiac ward during the weekend.

    And today we got the final report from the genetic test that she had. Her diagnose is a syndrome called Kabuki. It is a gene mutation that causes this syndrome. Cannot be fixed but explains everything that she is going through at the moment and what to expect for her future.

    We will keep you all updated.

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  • Iris Updates

      4 July 2023
    Posted by: Nicolas Zubok

    First of all, we would like to say thanks to every person that is taking some time to think about our little Iris.

    Last Friday she turned 3 months old and on Saturday she had an urgent open chest surgery to fix her heart.

    She is stable and recovering well but it will be a long journey..

    Hopefully she will be able to leave PICU in a couple of weeks.

    I will keep you all updated.

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