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"Last night was the hardest thing we have had to do yet. We told Isabelle her sister is dying..."

  • It’s with such sadness and a heavy heart to let you know, Alzaila has passed away.

      16 October 2019

    With incredible sadness but also relief we announce that Azalia passed away peacefully on Sunday night (13th October) at home just after 7pm. It has been incredibly emotional and absolutely unbelievable. We got our diagnosis in April and 6 months later Azalia has gained her wings! RIP our beautiful girl.

    Thanks again to each and everyone who has supported x

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  • Azalia probably only has a few weeks left with us at best

      26 September 2019
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    The last few days have been excruciating. Azalia has spent hours and hours screaming and crying and we haven't been able to figure out quite what is bothering her. Hospice are fully involved now and are of great support thankfully. However even the morphine hasn't helped her and she is requiring large doses of antiseizure meds to help. Every time we give a med we have to wait 15 mins to see if it works.. Often it doesn't. So her torment can continue on for an hour or 2 until we can get her calm again. It is so horrible having to just sid by her side and watch her suffering, not being able to do anything to help her!

    However we admire her determination to keep moving and to keep playing, she just doesn't give up. She is incredible how she is still managing to get herself around.

    Azalia has had a couple of vommits and with her increased agitation lately Hospice believe her stomach is not handling the intake so we have reduced it right back. The last couple of days she has only had about 20-40mls of nutrition (stuff all).. She is very weak and tired (to be expected). It comes with a slap in the face, about the reality of her dying very soon. Each night we put her to bed (we wonder if this is it..) It has really started to hit us and it is devastating. I can feel a hole starting to form inside me already.. A sense of emptiness and sadness 😓

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  • Only another two years at the most with Azalia

      8 May 2019

    Since Azalia's diagnosis a month ago, Kelvin and Sheree have been in and out of hospital numerous times. Azalia has suffered some severe seizures where they have noticed a huge regression in Azalia's abilities. Azalia is now only to eat soft foods (which she shows very little interest in eating) and is more or less fully tube fed now. Her walking ability has decreased dramatically and it is incredibly worrying allowing Azalia to move around with her decreased stability. Azalia is now only expected to live another 2 years at most... But miracles do happen.

    Unfortunately the government deem children under 5 to need a lot of care from their parents in any circumstance, so there is very little funding available to help take care of Azalia.

    Azalia is still some days full of energy and loves to run around and swing on her rope ladder and sit on her trike. Her favourite thing to do is watch Blaze and the Monster Machines and Paw Patrol on TV where she giggles away.

    Due to Azalias increasing needs and Sheree having to give up her job, the family is in a tight spot financially. So any little bit helps. The money goes directly to the family.

    Sheree has started a blog called Azalia's Journey on Facebook if you are interested in following.

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  • Less time than expected

      11 April 2019
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    After seeing starship yesterday, Sheree and Kelvin got more terrible news 😢

    “They have said that the drug trial isn't available in nz yet. We could potentially move to USA but it would mean having to go to hospital every 2 weeks to put the medicine into her brain for the rest of her life... So we been referred to hospice and Palliative care.

    They say she will likely lose her mobility next and then her eyesight and cognitive function.

    Her hearing will remain but she will not know who we are.

    This is likely to happen before she is 6. And live until 8-10”.

    I am absolutely gobsmacked and totally deverstated for Sheree and her Whānau. Sending so much love and support that I can give 😘

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