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Brain on Fire 🤕😪 Rare condition : Auto immune Encephalitis. Please help my whanau in this difficult time 💜💜💜

  • TIMELY CONDITION

      20 November 2020
    Posted by: Christine Hawkins

    With Cherish's slow progression Mum is now having to decide what to do with her other Children as they are missing Mum and being so far apart it's becoming hard for Mum to figure how to balance between being with their baby sister daily and thinking of going home to comfort her baby boys who are 12 and 4 now and again. Mums also now struggling to pay for extra bills that she would normally be able to pay if working. Cherish has a long way to go as with her condition, it is a timely one and with infections continously arising and her heart rate dropping, with 1 drop in her heart rate where compressions were needed and 3 more where she managed to get her heart rate up when her Dystonia hits full blown mode or her suctions set her off, it holds her underlying treatments back. She is still on a breathing tube and they are wanting to try for exacerbating. She has previously had 3 failed exacerbations due to her Dystonia and heart rate dropping. We want to help Mum get ahead of her Bills so that she can be comfortable for at least the next couple of Months as we all know Xmas is the hardest and after, and have that extra money to get her Sons up when and as much as possible. Christine has requested that the page stop as that is her as a person but we want to help her get as much help as possible as she would for us, so because she has requested, we will make this the last Month and a half to raise as much for her and her children.

    Tayla Jade

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  • Update 16/11/2020

      16 November 2020
    Posted by: Christine Hawkins

    Cherish has been through a bit where her surgerys were put on hold due to an infection. With the time the infection grew, so did her antibodies so the Surgeons decided to move aggressively, her Ovary was removed, her Tracheostomy was performed and where her infection was on her leg, the infected area was cleaned and drained. The results came back that she had a Teratoma on her Ovary and thats what the cause of the antibodies were, now for the hard stuff. Cherish still suffers with Dystonia quite bad which is the seizure like episodes, she will live with that for awhile and now we are on to the rehabilitation.. Cherish still has no speech and according to Drs it will take a lot of time and work but Mum keeps pushing with the help from Cherish's Dad.

    Time heals for this disease, patients and hard work. The Dystonia is the worse, because of her heart rate and blood pressure but that is being monitered heavily ..

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  • Fairy's update 27/10/20 🧚‍♀️

      27 October 2020

    Kia Ora

    Christine has been updated over the last Week. The news, pretty much, that her girl (our Fairy) will be in for the long haul as she isn't improving, at the moment her condition is at a stand still, her seizures are coming more frequently, up to 18 per day, tomorrow she has a endoscopy (keyhole surgery with a camera) and may either lose an ovary, or they find the cyst on her ovary ends up having a tumor on it (which they are hoping, as this is what's causing the antibody to produce) with this they have also discussed placing an tracheostomy (breathing tube in her windpipe rather then through her mouth) She has had several fevers and her OBS have jumped all over the place. The Family have been informed that Cherish will more likely be in for both her Birthday and well over Christmas and New Years. My friend and Cherishs Dad are beside themselves, Mum at the moment is now having to really look at options for her other children, as she rents in Napier and still has her home bills, but her biggest concern her other babies. Right now she is considering moving her baby here, but isn't willing to give up her home as that has become thier Family home and is Cherishs last memory, Her goal now, to give a Birthday for Cherish where she'll be turning 14 (the other children will be arriving, and a good Xmas for her other kids... She is looking to transfer her work to Auckland for a bit but will decide that a little later. Christine has too much pride and has always earned her living, so we want to keep asking for her, she doesn't look at this page as she feels ashamed. So please anything to give Cherish and her siblings a good Xmas etc and to help her eat and survive as well would be great, as all her money she gets she uses to support her babies in Napier, daily billing such as power, rent etc, her extra was work but now that is off the board. She is that Mum that puts her babies before herself no matter what..

    -tayla x

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  • Today's antics 🧚‍♀️🤞🏼🧚‍♀️ 15/10/20

      15 October 2020
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    Cherish' baby brothers Marshall & JJ arrived early this morning thanks to Nan Una and Poppa Paul❤️ It was a long morning not getting to sleep till 5 this morning, but so good to have them here with us. This morning our baby had a seizure lasting over 3 minutes, her first one in awhile, so they have restarted with the Kapra (Seizure meds). They are still doing the suctioning but very carefully and monitored each time as her blood pressure and heart rate keeps dropping on and off.

    Today she spent the day with Nan, Paul and Dad Shaun whilst I slept with my boys till late afternoon.. She had a large cough and vomit while Nan and Shaun (dad) were with her, so with this they have given her medicine to stop the secretions from building because it's becoming too much for her, probably thinking "why don't they do that in the first place!!?" Our neurologists aim is to try and get our baby to do everything herself and as natural as possible, without filling her with so many meds, which was something I (mum) requested from the start.. She has been rested today and been monitored all day by PICU (Peadeatric Intensive Care Unit) probably one of her quieter days, even with several PICU team members all at once having to come in and out to prepare for her heart rate to drop during suctions each time.. For now the aim is to let her rest as much as possible by sedation and as comfortably as possible till her next Plasma Exchange, get rid of the secretion while monitoring her heart rate and ensuring she doesn't flatline again and trying her without her breathing tube again.. Thier concern at the moment the drop and rise of her blood pressure and heart rate.. But as known it's a timely condition🥺❤️

    Our baby had surprise visits from her besties from Napier (can't keep them away no matter how far) Ellarose Te Hau and Serena Hubbard ❣️❣️ So we left them with baby for the night and now we are saying goodnight to her ❤️

    POMARIE ❣️

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  • 🧚‍♀️ New update on our fairy girl 🧚‍♀️

      15 October 2020
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    🧚‍♀️UPDATE

    These updates get harder everyday but I make it bible for our Whanau and our babies..

    Today was a hard day for me, and Shaun but the first day my baby made me cry in front of her with fear.

    This morning our darling started her 2nd treatment of Plasma Exchange, the amount of crap antibodies that was being extracted and needing to be replaced was as the Neurologist explained, LOTS. During this she also needed to have a blood transfusion as her hemoglobin count was very low (red blood cells that carry oxygen) which was done due to her blood pressure dropping on and off. The breathing tube was removed along with all the EEG lines and the day was set for her to hopefully cough all the secretion that has built up in her system, specifically in the back of her throat with the assistance of suction by the nurse. So during the day, things were going ok, her OBS were all at a stable level (blood pressure, heart rate etc) she was trying so hard to cough them out but unfortunately during one of the suctions, our darlings heart rate flatlined where she needed compressions for up to just over a minute followed by adrenaline... That was it for me and the worse episode I'd seen🥺🥺 I should mention, that now they know the suctions need to be monitored and carefully performed, they will be prepped, but their urgency to get to those compressions was so instant and fast!

    With this, the breathing tube was put back in and they will continue with the plasma exchange which her next one is on Friday. I feel she is a little bit more responsive, but not enough to keep her breathing herself. So the breathing tube will be left in for the next 48hrs untill her next Plasma Exchange.. She's looking at us in our eyes and I see the pain BUT determination in her big beautiful brown eyes.. So another step forward step back day and now we are going up to spend a longer night with her..

    On a beautiful note, our Fairy's favourite teacher from Napier visited, and the mamae I saw in his eyes was so genuine and he couldn't imagine our Baby ever being the one going through all of this (Teachers Pet) Thank you Bryan 🤍🤍💕 And thank you my Sister and Nieces for being there at that moment cause fml, I don't know who I would've hit💔❣️

    Our neurologist suggested watching the movie Brain On Fire which is based on a true story about baby's condition. Babys neurologist was actually one of the Drs that helped with that case, so for anyone that wants to see a bit about it, it's on Netflix. She did mention the movie shows a way shorter version and obviously missed alot of facts and our baby's case is way more severe. I've actually watched it a few times with my girls a long time ago, who would've thought, we would be living that movie.....

    Pomarie Whanau❣️🤍

    -Christine

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  • One Step Forward

      11 October 2020
    Posted by: Christine Hawkins
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    Our girl has now had her Breathing Apparatus removed. There is a lot of work being done to clear her airways and is still in a Semicoma as she is still not fully responsive however she is still in there trying..She's had a physiotherapy specialist in to help as much to clear her airways as well, yet suction will be going on throughout the night as it wasn't fully successful. She has been hooked up to an EEG machine all weekend and the results will be discussed tomorrow. She has had up to 9 focal seizures today, all under 3secs but apparently that comes with her condition and vomiting. It's one step forward on removing her breathing tube but her neurologist wants to be safe and keep it around as a precaution as she is the one Dr in NZ who has dealt with this specific Condition, and says to prepare theres always a chance of 2 steps forward one step back, that's how unpredictable this condition is.

    Mum is missing her baby's in Napier lots and urns for them and is hoping to get them all up here in Labour Weekend so that Cherish can hear their voices again.

    Also her Dad who is there as well.

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