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Help me look after my brother, diagnosed with Toxic Epidermal Necrolysis

  • Things are worse

      18 August 2022

    hi everyone. please please do not scroll past. please share. an important and very unfortunate, hard to write let alone think about update. there is no space or time left to soften the blows or make things sound better than they are.

    things are very suddenly much worse for peter. he has had another surgery today to assess and work with his eyes which now have ulcers on them (along with essentially every passageway in his body)

    last friday the doctors worked quick to place artificial membrane on his eye to try help it hold shape as well as convince it to self heal.

    the one bit of good news i do have is that it has remained rather than the body rejecting it, so it is what it is.

    the unfortunate news is it seems everything else is getting worse. he now has no skin left anywhere, including his face. the doctors have warned me that what i will see will be incredibly graphic, that he won’t be an ounce recognisable, that he never will be.

    and through their surgery this afternoon they have discovered a concerning amount of blood in his throat and his lungs. they will have to place a tube through a hole in his throat to help him breathe via tubes, something we already witnessed with our dad. he physically cannot breathe on his own, and the energy required just to be awake is currently life threatening and he must remain unconscious and ventilated.

    the doctors have urged us to understand it is by the thread of every ounce of treatment they are giving him, it is nothing short of medical miracle that he is still alive, and that every day that miracle is under threat.

    my passport is in the mail on urgent courier. i will fly the absolute soonest moment i can which will be more expensive than initially planned but there is no way in heaven or hell i will risk waiting another minute. i will have to worry about somewhere to sleep when i’m there.

    i thank everyone who has already donated. but i am asking please, give if you can. i don’t know how long it will be until i can find a way to support myself over there or the finances to support rylee here at home either. and i really cannot even justify in this current moment working in sydney knowing i risk not being there for peter if the worst were to happen which sadly i have to think about constantly.

    if he survives this hell, his life will never be the same again. he may not be able to be the fit body he had so recently developed the ability to love. he may not be able to speak his hilarious and optimistic truths. but he will always be my brother and the one we have both fought hard to be for each other. he will come home and i hope that it is alive and breathing, but i now spend every second knowing that might not be the case.

    pray that he does. speak to your heart or whoever you might believe in that he retains the absolute unwavering fortuitous drive he has given to everyone he has ever met, that he can use that and make it through this. i ask at my absolute limit that you help us as a family, provide him the support and company to know he is loved.

    thank you.

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  • Thank you for getting us to 2.5k!

      14 August 2022

    I really didn’t expect to get to this in 24 hours, it’s absolutely mind blowing and I can’t thank you all enough.

    We received an update today that it’s still early days to know if his eye surgery has indeed yielded positive results. He’s still out of it and won’t be eyes open for another week or a few days if we are lucky. He’s potentially being transferred to a ward soon so while the ability of what they can assure and promise is scarce, this is what we can consider good news.

    The other good news is that the emergency passport process is underway, and once that is confirmed tickets can be acquired ASAP.

    The next biggest logistical issue is regarding transport and more importantly, accommodations.

    After some quick searching there are some Airbnb options that are either just or almost affordable for at most 2 weeks. I know there are more donations due in and I thank everyone for the assurance, but if anyone knows someone who could possibly help me out with accomodation in Sydney for even just some of the trip, that would really help everyone’s dollar donated go a lot further. We have been told to expect some medical expenditures and aren’t out of the medical woods yet, so I would hope we can find a way to have this money make his way to actually helping him and not just help me be with him. We’re winging it but I am sure that with how much support has already been shown, that all will be well.

    Once again, I truly cannot thank everyone enough. This will remain an open donation until I get to Sydney and get a better idea of how much more we have to tackle, but already so much has been made possible thanks to all of you. Much love - Gray 🖤

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