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Arthur's fight

  • Update 3/9/2021

      3 September 2021
    Posted by: Givealittle

    Message from page owner, Lee - Anne Murray:

    First off, I want to thank everyone that has so kindly donated towards this cause.

    There have been some questions as to the use and intention of these donations.

    This give a little was set up with the intent of helping the family out while Arthur was in hospital, travel and other expenses incurred during that time. Unfortunately when he was discharged from Starship, he did actually end up being airlifted back there, and has been in and out of Waikato hospital in the past 2 months since the page was set up. Arthur was booked for surgery on the 24th August, which was then canceled and rescheduled to the 31st August. All of the consent forms and paperwork were signed, and then this was again canceled.

    Anna and Kane then wondered if they would need to top up their mortgage and pay for this privately, which was when one of the updates said they may need to go privately and this came with a hefty price tag which they were quoted.

    No one could see how much this was going going be shared on social media, and by influencers with large followings. There was a page set up on Instagram with the intention of also helping raise money should they need to go private for the surgery.

    Anna found out on Friday of last week that private surgery isn't an option due to Arthur's age.

    He was then admitted to Waikato again over the weekend due to episodes of him stopping breathing and going blue, which all stems from his severe reflux problems which is the need for surgery.A date has been set for two weeks time, for Arthur to have his surgery done publicly, as his surgeon has said he 100% needs this done asap.

    Unfortunately, Anna has now been receiving some really nasty and awful hate filled attention from some people who feel they are no longer deserving of any of these donations, because the surgery is being funded publicly.

    Kane has no leave left, and hasn't had for awhile, as being with Anna and Arthur in the hospital in and out for over 4 months has well and truly used that up. This includes sick leave, all gone. They have a mortgage to pay, bills, travel expenses still to cover. Kane hasn't been working full time with everything going on, only 1 or 2 days a week so there is a big drop in income. This family do still need the help and care that I initially set up this page for. The family is unsure how much in total they will need for travel and other expenses during this time but if there is any money leftover, a donation will be made to Starship.

    I went through a cancer diagnosis and treatment last year, and I know first hand the struggles and pressure financially that is put on a family in these situations, and I didn't want to see them have to go through that, not when their boy is sick.

    We understand if there has been some confusion around the need for funds so if you would prefer to get a refund of your donation, please get in touch with Givealittle at helpdesk@givealittle.co.nz by 4pm Friday 10th September to request a refund.

      8 comments  |  Login to leave a comment
    • 03/09/2021 by Amy

      Received an email of this update. I just wanted to say that when I donated, I was happy do it. Whether this was to fund public or private surgery, I wanted to donate to help not just Arthur but also his family and that means using the donation however they wish or need. I’m appalled that some people have requested refund or even question how the fund is being used. This family clearly need monetary support whether private our public healthcare.

    • 03/09/2021 by Caylee Wilkie

      That is so appalling that people are sending messages of hate! What this family is going through is incredibly hard and I bet they wouldn’t wish it on anyone!! Happy to have donated money so the family can use however they see fit. Hope it helps to relieve a little financial stress during this time and they get a positive outcome from the upcoming surgery. I’m personally relieved it can be done publicly and the family don’t have to spend the money on private treatment. Sending lots of love xx

    • 03/09/2021 by Jason

      Hi just wanted to say when I donated it was for you to spend it on whatever you needed help with so please don't let a few negative people ruin it.

    • 03/09/2021 by Megan

      Thank you for your update; i have to say my donation came without any conditions. Only support and love for this family and their story. All the best and hoping for good outcomes for them . please keep us updated and share our support for them.

    • 03/09/2021 by Morgan

      Just wanted to say that my donation also had no conditions, this family needs to use the money donated as they see fit, to be able to support their family at this terrible time.

    • 03/09/2021 by Pam

      Thank you for the update. I donated for the cause. The need to assist the family is still there. I won't be requesting a refund. Wishing Arthur and his family all the best.

    • 04/09/2021 by Dana

      Strength to this little man and his family regardless where the operation takes place, the stress must be ammence & any small but we can help 1 kiwi family the better. Xx

    • 04/09/2021 by Ann-Marie

      Hi, I feel heartbroken that anyone was sending such messages. Like 99% of people I donated knowing it would go to help in some small way and don't mind how it is used. Sending love and good luck for Arthur's surgery. Stay strong!

  • CF update

      26 August 2021

    Great news, the results from the CF tests have come back negative!

    Now let's hope he can get this surgery so he can have the feeding tube removed and the splints off his hands for good

      1 comment  |  Login to leave a comment
    • 26/08/2021 by Rebecca

      That is fantastic news 💙

  • Latest words from Anna

      21 August 2021

    Please help if you can, Arthur's surgery now may not go ahead due to Covid restrictions, and they now are looking to get this done privately which could cost them $30,000.

    ---‐--------------------------------------

    This afternoon Arthur’s Paediatrician finally rang.

    We discussed how Arthur was doing, and how his week has been.

    I then asked her what’s going to happen if we’re still in lockdown on the 31st and she then said his surgery will get postponed… she proceeds to say that they are only doing life and death surgeries.

    Let’s just get this straight, first I was told that Arthur was an emergency and needed to be done ASAP, then he gets pushed back a week and now she’s saying it probably won’t get done on the 31st….

    Is breathing/apena episodes not an emergency?

    Is aspirating not an emergency?

    She then said that she would like to have a meeting next week with everyone including the specialist at starship.

    Starships specialist have said that they don’t think Arthur should have the surgery as he should grow out of it, and to leave the NJ in for 4-6x months so he doesn’t have apena episodes. This dr has only seen Arthur 2x when we were in starship. I have no words, to say the least I’m absolutely disgusted.

    This would mean Arthur would need to remain wearing splints for the next 4-6x months so he doesn’t pull his tube out. He’s already delayed, he doesn’t roll, or sit alone, wearing the splints for that amount of time will only make him more delayed.

    If he was to pull the tube out he would need to be readmitted to hospital everytime, be sedated, and have a 3-4x night stay.

    How is this even possible when we have a toddler at home and Kane needs to be at work? We to have bills to pay. This isn’t an option.

    These drs/Specialist don’t live our lives, they don’t spend 3.5x months in and out of hospital, they don’t get flown via helicopter because their baby stops breathing, they don’t know what it’s like to have a baby with such severe reflux that it causes their baby to stop breathing all the time!!! How is this fair???

    I’m so confused and frustrated with the health system.

    Arthur’s surgeon has said that he needs this surgery, so why are the specialists who don’t know him saying no, I don’t understand!!!!

      1 comment  |  Login to leave a comment
    • 31/08/2021 by Kiri

      Hi Anna,

      I stumbled on this page and have read your updates. If Arthur needs tube feeding for another 4-6 months, have the doctors spoken to you about a gastrostomy tube? This is a tube into the stomach or jejunem from the torso, and comes in a range of styles as such (e.g. MicKey tubes). They are used for people who require tube feeding for over 3 months. Due to protective coverings and binding, babies don't pull them out, freeing up their hands and arms. It does result in a scar that is around 6-7 mm in diametre on their abdomen once it is removed, and the site does need to be cleaned and kept lubricated, however, this is very easy to do. NJ tubes need cleaning and regular replacing, which can be rather distressing for little ones.

      Just thought i'd mention incase you weren't aware of this option.

      Also, another heads up, under L4, 99% of private surgeries can't be performed. I hope your little man and your whānau get the go ahead for his surgery next week!!

  • Words from Anna

      4 August 2021

    Imagine being in and out of hospital for the last 2.5 months and only been 5 months old.

    This is Our life, it’s hard, we’re constantly apart, Kane’s had to go back to work now as we can’t financially afford it, he’s used all his holiday & sick days up.

    I’m exhausted, I miss Emelia so much.

    I want to physically touch, hold her, and stroke her hair. Video chat is not the same.

    We have no answers, no explanation for what’s going on with Arthur.

    He got flown to starship 15x days ago, got discharged, then got readmitted last Tuesday, to be discharged on Friday to then be readmitted yesterday, we can’t live like this.

    I’m constantly on egg shells, I can’t even go to the toilet or leave his sight incase he stops breathing.

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  • Update on Arthur

      29 July 2021

    Arthur is currently back in Waikato hospital. He has stopped breathing multiple times, but the family still have no answers as to what is happening with their sweet boy.

    There has now been something picked up with his heart so hopefully he will be seen by a cardiologist tomorrow.

    How has this wee babe had to endure so much and have no answers to why?

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  • Update on Arthur

      22 July 2021

    Arthur was discharged from Starship a week ago, things were looking well. He is to have tests for Cystic Fibrosis as these weren't done in Waikato.

    Unfortunately a few days ago, Arthur aspirated twice while at home with mum and his sister - stopping breathing and turning blue. He was flown to Starship on the westpac helicopter, and stayed overnight. He is to be seen again in two weeks to run some more tests on some other things that have been found.

    This sweet boy is still not out of the woods and him and his family have a long road ahead

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