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Lets Get Jackson walking again!

  • Week 13 & 14.

      4 May 2024
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    We are truely grateful and immensely appreciative of the response to Let’s Get Jackson Walking Again Give a Little page and all the aroha and donations. The response has been incredible and we thank everyone!

    Jackson has started the Transitional Rehab programme. This has given him the confidence to go shopping, plan a rostered meal, cook for others in the Spinal Hostel. Spag Bol was on the menu :)

    Jackson and Rob have been out with OT who are teaching Jackson how to be independent in his wheelchair when in public places. This included trips to the beach, and how to get himself out of being stuck in the sand etc. A few trips into town and also to a wheelchair factory made it a pretty busy week.

    Three more weeks and he should be home.

    Due to the generosity of this page and also Robs & Jacksons work, we have been able to have Rob stay down in ChCh to be Jacksons support whilst I (Mum) are up here in PN working and being with S & A. It probably means that i wont be back to ChCh, however am very excited that my boy (and husband) will be home in no time.

    Big thanks again everyone. The money donated will allow us to do some much needed renovations to our house so that Jackson can still be independent with his cares (like showering etc) and also once we both return back to work then we know that he is safe in his own home.

    Our young man is incredible and he is getting better each day! Literally, one step at a time :)

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    • 05/05/2024 by Brenda

      My mother has transverse myelitis and we would be very happy to talk to you (parents) about our journey if that would be helpful.

  • Week 12, 1 month till Jackson could be home!

      23 April 2024
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    Jackson is now settled into the Spinal Hostel at Burwood. Will be starting the 4 week program to transition into a home environment and community confidence by the end of this week.

    Meeting with Drs 10d ago allowed us to talk further about getting home. The Drs have consulted with Neuro team in PN and the ivIG transfusions will continue for another couple of months. The team fought hard for Jackson for this valuable blood product and we are grateful. It’s just under 5 weeks till Jackson may get home.

    Home is looking like a hospital storage room with a loan wheelchair (till he can get his suited one), commode, shower chair and various other gears to help him do daily tasks more independently.

    Jackson has been doing driving lessons in a modified car and is acing it (and getting to see parts of ChCh that he hasn’t been able to access whilst living in a hospital).

    We are looking into modifying the bathroom as what the OT has suggested is not going to work with the space we have. We get very minimal funding from MOH and it will not cover much of the bathroom adaptions. It’s pretty much on our own wallet.

    Thank you for the support and love so far. It’s exciting and scary for Jackson and Team Torok to get him home, but the journey to recovery will not end when he gets home and we will do our best to accomodate his home to be suitable for his needs. Jackson is so incredibly determined, brave, and fabulously cheeky. We are so proud of him. SO PROUD!

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  • Week 11

      16 April 2024
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    Jackson has started to walk without the 'Jolly jumper'.... Huge progress and managed 60ish metres doing this!

    Catheter bag is out, in TR getting ready to go on the programme to help transition home. We are week 11 and have approx 5 weeks left in ChCh.

    So much has happened in the past week but Jacksons intune with his body and allowing rest to recoop, rest to heal and to allow the emotions to surface and process.

    It's not easy on our Jackson, however we are super proud of this son of ours and are honoured to be here with him and celebrating the highs and unconditional love for the lows.

    The Give a little page is still active. We don't get funding like ACC would allow as we don't qualify for ACC. The insurance company hasn't budged, ACC not there as it's a medical event. Social development can't help as Jackson only 17 and lives at home (social worker is trying really hard to navigate this!).... And we are now on one wage. We are so appreciative of everyone's generosity as we make Jackson our #1 priority here in ChCh and S&A our priority in palmy.

    Thanks everyone, thank you for your incredible support.

    #letsgetjacksonwalkingagain

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  • Week 10

      7 April 2024
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    Jackson is doing well at Burwood. Has had his brother and sister visit for the weekend and Rob and Tracy have done the parent swap for another two weeks.

    Discharge date is mid-May but only if his function tests pass and also if he is more stable on his feet.

    Tests for reflexes, bladder function and big team meeting this week to look ahead for the next month. Hoping in 2-3w time he will be in transitional rehab then will be 4w there.

    Have had OT in at home to assess ramps, bed transfers, shower fittings, etc.. bit of an eye opener to what’s going to be the normality of Jackson being at home.

    He is keen to head home but very nervous as it’s very different to prior coming into hospital. Will take each day as it comes. Thanks for all the messages and love. We really do appreciate everything that is being sent our way xxx

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  • Best news!

      28 March 2024
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    After two months since transverse myelitis entered into Jackson’s life… he got the best news! The inflammation of his myelin\spine is decreasing.

    This is from his medical treatment and his incredible perseverance and determination.

    So good to hear this news, knowing that treatment is working and that his condition hasn’t got any worse. This boy will be moving full steam ahead.

    Expected discharge date home will be by Kings Birthday weekend.

    Thanks again to everyone. Your aroha and donations are helping immensely as Rob and I take turns to be with Jack and see his improvement first hand!

    We are so grateful to all the wonderful people who have donated, bless you all.

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    • 01/04/2024 by Maylene

      Fantastic news, Jackson you are a real trouper, keep up the great work .

      Love Aunty Maylene & Dave Xx

  • Extension to discharge date

      25 March 2024
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    8w update. Yesterday was a pretty good day. X2 extensive physio sessions and OT support for transferring from chair to couches.

    The health team forJackson at Burwood made the decision to push his discharge date to mid-June, an extra month.

    The Drs who started the investigation with Jacksons health ph Burwood &advised the test that were sent overseas has come back as negative to MOGAD. Jackson will still be treated as transverse Myelitis. More CT and MRI scans to also tsee further markers of the disease and how it’s responding to treatment over the last 8 weeks. His full assessment has been sent to Oxford in the UK for in-depth analysis.

    Jackson has been fitted with a cool new wheelchair, and he is learning even more wheelies in this. The wheelchairs name is Jenny, since Jacksons nickname is Forrest.

    Wheelchair bball came to Jackson’s gym session and got him in a specifically designed wheelchair to play on the court. Jack made it look easy.

    Jack feels a bit numb with all the changes but he is also very grateful where the progress has been made in the last 8 weeks.

    After my next visit then we will talk about leaving Jackson down here for during the week and then flying down for the weekend to keep him company. It’s the only way with being on one wage.

    Thank you to everyone, it has shown us even more that friends, family and community are incredible.

    The insurance company is still not budging. Claim declined. No ACC funding.

    Jacksons attitude and determination is contagious!

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  • When family comes first but the insurance company is being difficult.

      18 March 2024
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    7w 2d

    nearly a month since Jackson was sent from PNH to Burwood.

    Physio helps strengthen with his leg muscles. The knee's give-way & cannot weight bare. His ankle has ‘drop foot’ which is not ideal. Every day is small progress which makes big difference in overall recovery. Some days have been quite weary, and others are emotional, but Jackson gives it 110%.

    it’s parent swap with Rob this weekend. At the end of this stay we will have no leave between us, we thank you for the koha that may allow us to keep being with Jackson.

    We have life insurance with a Childhood Trauma clause, we out a claim in. It got declined 😞.insurance said they want to wait & see if Jack improves in 6m before paying any $$ out. This is gutting as it’s now that we need financial support as living two different islands and two different “lives” for Rob and I. Jackson also doesn’t qualify for benefits as he is under 18, wasn’t in employment for a period of time, comes from a stable home and none of it is under ACC.

    The plan for now is to have a Rob or I by Jack whilst he’s inpatient, once he is in transitional care, then we will work during the week, fly back on the weekends to spend it with Jacko.

    We have also made the decision not to bring S & A to ChCh (yet) as the $$ for AirNZ are ridiculous and will cost near $800 for 2 return flights.

    Our unit is paid by the DHB & for the flights that rob and I make.

    Jackson Torok’s optimism and massively positive attitude is helping all of us

    Love Team Torok

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  • Week 6

      12 March 2024
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    Kia ora all. Thank you for all the messages, koha and aroha. Jackson is enjoying reading everyone’s notes with the donations and he is appreciating the Dad Jokes being sent.

    The past week saw him fighting an infection, however today he is back in his wheelchair and showing his mama around Burwood. It is a massive place, so many wards and so many wonderful opportunities to get Jackson back to physical health.

    The dog therapy arrived yesterday. Jackson realised how much he missing the animals back home. But Pip, the St Bernard was happy to give him attention…. Man that dog can dribble!

    Rob has returned back home. We are calling ourselves the “South Island” and “north island” parent… which ever place we are at.

    Jacksons pressure sores on his feet have heeled (these happened in the first week at PN hospital) so there is less risk of infection now.

    Fingers crossed that he gets back into physio tomorrow after a week of bed rest.

    We are so incredible proud of Jackson and the positive (and cheeky) attitude he has. He really has some amazing friends here and there is always a big hi to him from everyone here. (He is a self confessed celebrity in HG wing xxx)

    Thanks everyone. Lots of love, Team Torok

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    • 12/03/2024 by Sandy

      Jack you will want to take Pip home. Great to hear infections are now healed. You have got this love. Your upper arms are going to beat dads.

  • There is a date in sight!

      6 March 2024

    Good news! Loving being able to Zoom into the medical meeting so i can see Jack and Rob and all of Jacksons amazing medical team and support in Burwood.

    They are thinking that Jackson will be in Burwood medical wing for another 5 weeks, this will allow him to complete the 3 month course of immunoglobin therapy and steroids.

    When Jackson is fit enough to and not needing as much medical intervention then he will be placed in transitional care. Kinda like a flatting situation but in Burwood grounds. This will allow Jackson to learn and continue to care for himself whether that be as he gains strength to walk again or if a wheelchair is still needed.

    Once he can master this then he can come home and adaptions to the house will be assessed etc. Let’s bring on May!!!

    Big thank you to everyone for the aroha and support. We appreciate you all so much!

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  • “These feet are made for walking”

      5 March 2024
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    Jackson is feeling the full effect of the immunoglobin therapy that was done in PNorth. He now has 3 out of 5 reflexes in the right foot… the left foot is still trying to get there with 1 out of 5 reflexes.

    Maintenance immunoglobin went up yesterday, so far so good. It was meant to be Saturday but Jackson had much more important plans… To go shopping! Being stuck in a hospital environment for over a month can take its toll, so off on the City bus they went and Jackson was able to get (trendy) shoes that will allow his ankle to be supported while he gains movement and reflexes. It was also the first time that Jackson had been out in public as the “guy in a wheelchair”. He took it in his stride and played staring games back at those that were looking for a little bit longer than what was needed.

    Rob is home this Sunday to be with S & A for two weeks, I leave on Saturday.

    A big thanks to all that have supported us and donated, cooked meals, done firewood, sausage sizzles, mufti days, looked after S & A… and just allowed us to take one day at a time. The support has been incredible.

    The Give A Little will allow us to get S & A to ChCh to see their big brother, and also allow a little bit longer of bringing in only one wage. (Jackson, it is not there for a brand new PS5, but we will get one, one day)

    THANKS ALL, we love ya!

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  • Speedy jack

      25 February 2024

    Last year he learnt to drive in a manual, got his license…. Now he’s learning and acing the wheelchair. Need for Speed! Cannot up load the video I wanted, but he’s acing it. We will need to run behind him just to keep up:)

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    • 26/02/2024 by Sandy

      No L plates for you then Jack. love you from Nan Nan and Poppa

  • Careful ChCh , the Toroks have landed

      22 February 2024
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    Thank youso mich for the most amazing response with this Give A Little page. Its being very heartwarming to read all your messages.

    Rob and Jackson have been in Burwood and settling in well. Lots of specialist appnts etc then the physio starts.

    There's been talk of 6 months in Burwood but we are optimistic that Jackson's determination will get walking outta there quicker.

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  • Next chapter

      21 February 2024
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    Jackson and Rob have landed in Christchurch. Extensive rehabilitation here they come!

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