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Support for Aroha and her family during her recovery from Stevens-Johnson Syndrome

  • 15/8 From Aroha Part 2

      15 August 2023

    I have also been put in a situation where I’ve had to move out of my home as needing full time care wasn’t suitable for the head tenants lifestyle but I’ve been lucky enough to have people who have opened their home to myself, mum and Emma. So in saying this If anyone knows of any 2 bedroom rental out there in Perth (east Perth area) please pass them on.

    As much as I’d love to say I’m coming back nz I can’t as of yet. I’ve been very fortunate in the sense that I have the best specialist for my condition in Perth. My mum Shar has extended her stay multiple times to help me out with day to day things and as well as getting me to and from my appointments.

    Thank you again to everyone who has been there to support me but also my family, this is been an experience and a half to say the least and I’m more than ready for this chapter to be over.

    -Aroha ❤️‍🩹

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  • 15/8 From Aroha part 1

      15 August 2023

    It’s been a lot harder out of hospital over the last 2 weeks than I expected physically and mentally but day by day I’m making small improvements. I thought I’d be up and running again by now but my body is very deconditioned and it’s taking a lot more to build up the strength and weight id lost well being in hospital. Throughout the last 2 weeks I’ve been seen by 5 different teams through rehabilitation in the home multiple times a week as well as continuing to see my specialist from the hospital weekly as an outpatient.

    Unfortunately my eyes aren’t improving and I’m still vision impaired. I have 2 specialists that are working hard on new ways to help progress my eyesight including custom eye drops made out of my blood (wild what they can do).

    My skin has grown back the last 1% but I’m still dealing with a lot of nerve pain and sensitivity to the skin from the cold, heat and different materials. It’s a very strange sensation that should go away in time. From a medical perspective this is a good thing. The pigmentation from the worst parts of my skin that were affected will still take 6-12 month potentially longer to fade but they’re hopeful they will fade.

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  • August Update

      5 August 2023
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    1/8 After 7 days in an induced coma, 17 days in ICU and 14 days on the ward, Aroha has headed home. She still has a lot of healing to go but this is a huge step in the right direction.

    She has started physio/rehab at home. The physio says she has lost a lot of condition, 7kg of weight and is still very weak.

    Aroha doesn't qualify for any extra funding/help from the Australian health system as she has not been there for 10 years but needs to stay where she is as she has the some of the best specialists in Australia.

    She sends all the love in the world for everyone being the best support she could ask for. She wouldn't have been able to stay positive and keep smiling without everyone's continued support and messages.

    Shar flies home on the 10th August and is pretty worried about leaving her little girl. She would bring her home in a heartbeat if the level of care here was as good as there, but it isn't.

    I'd love to ask if you could please share this page around a bit more, it would be good to be able to fund some home help for Aroha once Shar has come home. I really appreciate everyone's generosity and kind messages for the Cromb's in this hard time for them. Aroha is such a fighter! I really admire her strength and determination to beat this.

    Sara x

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  • 25/7 Update from Shar

      25 July 2023

    Aroha's eyesight is slowly coming back but she will need glasses - the membranes have been removed from her eyes but her vision hasn't returned as good as it should have. She is very low on energy but is trying hard to keep positive.

    Her nerve sensations are coming back which also means she is quite sore.

    She has had a couple of trips outside in a wheelchair and can manage small walks up and down the corridor in the hospital.

    She may be discharged at the end of the week but the recovery will continue at home with a lot of prescriptions and outpatient appointments for her eyes and skin.

    Aroha is very grateful for all of the donations, messages of love and support. It means the world to her. It has helped to keep her positive with everything this experience has thrown at her.

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  • Out of ICU

      20 July 2023
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    Finally out of ICU and into a ward

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  • Update from Aroha

      18 July 2023
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    I’d just like to start off by thanking everyone for all the love and support over the last 16 days. I’ve definitely felt it and its keeping me positive for the continuous battle ahead.

    For those who don’t know, on the 10th July I was diagnosed with Epilepsy and put on Lamotrigriine. On the 3rd July, I unfortunately had a severe reaction to this medication leaving me in the ICU, in a coma for 7 days fighting for my life.

    I’ve since been diagnosed with Stevens-Johnson Syndrome which is a rare but serious disorder of the skin and mucus membranes.

    I am still currently in the ICU waiting for a transfer to another ward and I’m having my feeding tubes etc removed. My skin has 1% left to heal and I’m waiting for my eye cells to heal.

    I’m on the mend! It’s going to be a long road ahead but I’m more than capable of getting through this next neck of the woods.

    I’d like to thank everyone who’s been able to donate, it’s made the world of difference. I’d also like to thank everyone for the positive messages, they really do mean the world to me and each one gives me more strength to keep fighting on 🩵

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    • 18/07/2023 by Kym Maree

      Sending Love to you sweetheart and Mum and Dad by your side and Jay! Your spirit is exceptionally strong and you are deeply Loved, DJ will be holding you in Love as well.. you are in my heart and prayers young lady ❤️❤️❤️❤️