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Lets Get Jackson walking again!

  • 6 months

      29 July 2024
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    Big thank you to everyone who has been supporting Team Torok on Jackson’s journey for the past 6 months. It’s been a whirlwind!

    Treatment continues… physio and Drs appnts, including every 4 weeks having transfusions.

    Jackson is getting out and about more and fiercely independent. This months trips have been to fit for shoes to wear with his splints, yes grandpa shoes but they’ll be good for physio. Jackson has headed out to Wheelchair Basketball training , and even to the cinema with his mates (parents stayed home)… lots of exploring shops, some more wheelchair friendly than others.

    Bathroom starts in august, been a delay with supplies and tradies but everything is now falling into place.

    Jackson has continued with improving his mobility, including doing a mammoth 7 lengths of our hallway with his walker! Physio department has had a big staff illness rate so has been limited with reduced physio days.

    Tracy (mum) , who works at the hospital, has had her shifts reduced due to budget cuts, downfall on this is less income, but we find silver linings and may just mean extra support and company for when Jackson is at home.

    Our motto is “sh1t happens”, so when it does , team Torok processes it then looks ahead, find the silver lining in what’s happening.

    Thank you for all the messages and love. We have an amazing community that we are so grateful for! Thank you!

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  • Week 22.

      30 June 2024
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    Kia ora all,

    Jackson has been home a month now and adapting to being in a chair very well.

    Physio has started back up again, and also some extra physio at home which the whole family takes part in.

    Jackson is still dependant for the wheelchair, but has attempted crutches in physio. He cannot weight bare on his legs, the splints help with that, but he is gaining more muscle feeling back and can now see all his hard work is really really paying off. His aim is to be on crutches within the next few months.

    We have been fortunate to meet another TM whanau, and they have given us a look into the future, and Jackson is excited! It is great to see that opportunities present and silver linings appear during this journeys that no one expected.

    Our wonderful friends and community did an incredible job with organising a quiz night fundraiser, we are so so thankful for all our whanau and friends coming together not only on that night, but every other time to really boost our spirits and ‘walk’ alongside Jackson during everything.

    Thanks again everyone! We love you all xoxo

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  • Week 19 update

      10 June 2024
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    Wow! How have we all got to 19 weeks? That’s getting close to half the year gone!

    Jackson is doing incredibly well, been at home just over two weeks now and has really impressed all with his independance. We are so forever grateful that our young man has been so positive throughout this whole ordeal. Nothing is too much for him and his humour n cheekiness is really putting everyone at ease.

    Some one sent us a message the other day to say that Jackson was just the same person but just with wheels. We are so proud of him and his attitude, he could have been so much angrier and really bitter about the situation. Do forgive us if we start with the ‘wheelie’ or ‘standing’ jokes, coping mechanism i guess. Jackson normally is quick off the mark with wit about his situation.

    Today we saw the Neurologist who has been monitoring him since this all began. She is hugely impressed with his mobility and how far he has come.

    Plan? Two more years of treatment, ivIG transfusions monthly, steroids, blood thinners. Possible surgery for a port to help with accessing his dodgy veins.

    Thought of a spinal stroke has been internationally debated with his condition. Still pointing more in favour with Transverse Myelitis.

    Results from Oxford (UK) came back negative for anything further. I suppose we might never know why?

    We want to say a big thank you from Team Torok for all the love and support. The aroha shown has really got Jackson and us through the thick and thin of it all. Massive Thanks!

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    • 11/06/2024 by Debbie

      I am so happy that you have Jackson home and follow with interest his road back to recovery. Jackson, can I just say what an amazing and resilient spirit you have. You have made it possible for your family to look ahead down the road with somewhere to go, not back! I am looking forward to the day when we get a phonecall from you saying you are ready to come back to work. Tracey and Rob, Jackson got lucky with you two, parenting 101 right there!

  • Lots of ‘little’ things add up

      10 June 2024

    Changing the closing date to end of July as everything is really starting to add up at home. New update to be posted soon :)

    Big thanks to everyone!

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  • Week 14, It has been 4 months

      28 May 2024
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    Yesterday marked 4 months since this journey began.

    Jackson is now home!!! A warm and hilarious welcome home at the airport then a Team Torok Dinner. So appreciative of having all 5 Toroks under the same roof again. Fills the heart!

    Jackson is settling in to the comforts of home well. He has admitted he missed our German Shepherd the most.

    It has been a flurry of appointments already this week. Physio, Occupational Therapy, carers and supports, Mana whaikaha, GP appointments. Taking each appointment as needed and navigating the space at that time.

    Getting Jackson out and about is more tricky than what we thought. Our car did not fit the wheelchair (even when the chair was pulled apart), so we traded the car for one that’s more practical. Our car dealer was incredible and we found a car perfect to our needs. Even with our extremely limited budget!

    Adaptions to the bathroom were more outrageous but have DYI’d it till renovations can start. We were totally unaware how much bathrooms cost! Renovations can now be ok’d thank you to this GIve A little Page (MOH would have been at least 6 months away and there was so so much red tape!)

    Big thank you to everyone!

    Jackson is so happy to be home, he is comfy and enjoying the couch and his own bed!

    We are enjoying having him home and it feels strange that he hasn’t been here for 4 months… but yet it feels the same, just with way more therapy equipment up the hallway and also him saying hello from his wheelchair zooming past our hallway.

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  • Week 17 - Almost home!

      22 May 2024
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    Team Torok has been blown away by the response of the Give A Little Page. It has really saved us in finding even more $$ to get Jackson home and in the house that he feels mobility safe in.

    The page and everyone’s generosity from family, friends and community has been incredible!

    The love and support for our Jackson has been beautifully received and sends such a warmth sense of love and strength behind us.

    Jackson has one more sleep then he is home!

    Walking is going well. Using the high walker and taking massive strides, sometimes the brain sends messages quicker than the legs can do but he balances himself well and continues like a champ.

    We have had a ramp installed at home and a concrete pad so Jackson has access from driveway and letterbox to the deck/into the kitchen. Our dog is scared of the ramp!

    We have had some quotes for the bathroom renovations. We aren’t able to do a full Reno but have been looked after by a local business who has provided us with an alternative option to get the costs down. We are so grateful for the donations and kindness so that these renovations will allow Jackson to be even more independent with his own cares.

    It has been 17w since this all happened. We are so eager to get Jackson home and to have team Torok under the same roof. One more sleep to go!

    Thanks again everyone, we honestly would not of been able to get Jackson home to a mobility friendly house without you all.

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    • 23/05/2024 by Helen

      Hi Jackson

      So pleased to hear the news about you heading home. Well done and all the best, Gavin and Helen

  • 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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