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Supporting Elyse

  • Update on Elyse ~ October 2017

      15 October 2017
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    Considering that Elyse's last scan in July showed some growth and that the tumor had grown 2-3mm each way (which is considered stable) Elyse is doing well. Back then (July) measuring the amount of growth that had occurred since the previous scan it looked like we only had 2 months left with her but once again she is defeating the odds. :-)

    She is happy, moving around lots and still making sounds which is so good to both see and hear.

    Coincidentally since she has been on the CBD & THC oil she has been good all round!

    Visit the Supporting Elyse facebook page to see recent updates and videos.

    The Tilray CBD oil is proving to be beneficial along with the Sativex and liquid hope. Elyse is glowing. It's just absolutely disgusting the cost of these wonderful medicines and the lengths that families have to go to to give their loved ones what they need.

    Please share Elyses story and if you can make a donation. Thank you so much for your support <3


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  • Progress report 12/01/17

      12 January 2017
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    Elyse was diagnosed with DIPG (diffuse intrinsic pontine glioma) on the 8th April 2016. A terminal brain tumor with an expected survival time of 2-9 months from diagnosis. That was 9 months ago. During this time we have spent countless days researching effective alternative medicines that are effective in killing tumors and helping her body fight for itself. The TBL-12, Frankincense, Sativex, Vitamin C and Dandelion are all helping, thanks to all of the donations the Supporting Elyse Givealittle page has received. (Just over $48,000). We all strongly believe it is helping to fight the tumor. Since her last pediatric appointment which went so well, Elyse is continuing to show signs of improvement.

    There is just one worry. While we already have received so much support, we need your help to find sponsors who will provide ongoing donations to help pay for Elyse's medicine. The donations received are running out. Fast!

    You can help by sharing Elyse's story or asking friends, family, colleagues if they know anyone who will sponsor Elyse. Your support is key in solving this problem.

    Would you consider donating an ongoing small amount to help us achieve our mission?

    We thank you in advance for your support! Your donations are greatly appreciated and will be used to Fight DIPG and potentially lead to finding a cure! You can either donate online at, or PM the Supporting Elyse facebook page for more information.

    Thank you again

    Vicky ~ Friend & Advocate ~ on behalf of the Johnsons <3

    m: 0275110725





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  • Pediatrician appointment 4/1/17

      4 January 2017
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    2 months ago we had a scan and they said it looked the same, but after getting measurements, turns out it had grown slightly - just over 1cm in 5 months, That was 2 months ago, we expected things to be alot worse now. We had a pediatrician appointment this morning and the pediatrician couldn't belive how well she is doing. She (the pediatrician) kept saying she is a fighter and she looks better than a month ago, we have been on Sativex now for over a month and the results have been amazing! Elyse has been on the TBL-12 for over 8 months now along with 5 other natural treatments! We really hope it's shrinking the tumor! Thank you for all your donations it helps so much, keep fighting my princess you got this xx

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  • Extension of page closing date.

      28 December 2016

    This update is to inform Donors that we are extending the Supporting Elyse Givealittle page out to December 2017. Why? Because Elyse is a fighter and we will conquer DIPG!

    The day that this page was created was the day of Elyse's diagnosis, the family were told their beautiful sweet little girl was very sick, there wasn't much time and the doctors could do nothing to fix her. Since then a lot has changed and there is hope, hope that we can beat this evil tumor.

    Thank you for your support.


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  • Sativex update

      28 December 2016
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    Sativex (medicinal cannabis) update:

    We are making slow but steady progress and seeing good signs since Elyse has been receiving the Sativex. She is moving her muscles more in her arms and legs, she is increasing her head and neck movement and opening her mouth more. All this in just 4 weeks! Sadly though another child (5yr old Jeda in Northland) has been diagnosed in NZ with this so called 'RARE' form of cancer. We need to let NZ know that there are alternative treatments that can help and potentially be a cure for DIPG. However Sativex costs more than $50 per milliliter with Elyse's first prescription setting them back $1650.

    If you have already made a donation to our Christmas Appeal, thank you so much for your generosity. If you have not yet had a chance to give, there is still time for you to help make a life-saving difference. Your donation will be used to help fund Elyse's ongoing medical expenses, and alternative treatments that will buy Elyse valuable time until a cure is found. Please if you cant make a donation, share Elyses facebook page and Givealittle page so we can get the word out. Thank you for your help.

    Kind regards,

    Victoria Beacock

    Supporting Elyse/Cause

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  • Sativex - Approval to prescribe and supply.

      10 November 2016
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    The Ministry of Health have finally approved the use of Sativex to assist with the palliative "management" of Elyses DIPG. This is a big deal for her family! There has been so much positive feedback around the use of medicinal cannabis all around the world and yet it is still NOT FUNDED by Pharmac!

    Research over the past decade or so has successfully been showing the great potential of cannabis and, more specifically, the practice of using cannabinoids in cannabis – THC and CBD – to shrink and inhibit the growth of tumors.

    The most compelling evidence of THC’s ability to kill tumor cells comes from a time-lapse video taken with a microscope over a period of 20 hours. The video shows the cannabinoid killing actual human tumor cells from an active tumor (on the right) and leaving healthy cells (on the left) alone.?

    It is our hope that cannabis’ potential to save Elyse will enable necessary changes with the legislation of Cannabis in New Zealand - so lives can be saved.

    Paying for the Sativex, which costs $1100 per prescription, every 3-4 weeks, should not have to be an issue for any family fighting a terminal illness.

    This expense, the TBL-12 and all of the extra beneficial alternative medicines Elyse is taking to fight the tumor are costing almost $3,000 every 3-4 weeks.

    You can help by making a small donation and sharing Elyses story.

    Thank you!

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  • Your donation can make a difference this Christmas

      10 November 2016
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    It is only through uniting with others that we can succeed in taking this vital step towards achieving our hope of a world where DIPG is defeated.

    A Cure Can't Wait! We are researching, forward-thinking & outcome-orientated!

    ?Please join us and be part of this success – DONATE, SHARE the Supporting Elyse Page with others and BE THE HOPE!

    To make a donation to our Christmas appeal click the DONATE NOW button.

    All donations are helping Elyse's family to purchase non-funded proven alternative cancer fighting medicines and supporting applications for clinical trials.

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  • #HOPE

      6 August 2016
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    Two very important parcels being sent to Professor Charlie Teo in Sydney and Professor Karl F. Kothbauer in Switzerland Containing CT scans, MRI scans and medical notes for Elyse. #HOPE #SUPPORTINGELYSE #FIGHTDIPG

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  • Full Terms and Conditions for Supporting Elyse & DIPG Awareness Raffle 2016

      30 June 2016
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    Terms & Conditions 29 June 2016

    Full Terms and Conditions for Supporting Elyse & DIPG Awareness Raffle 2016

    Prizes for the Raffle are:

    First Prize – Winter experience pack for two - Valued at $1678

    Second Prize – Family adventure pack - Valued at $831

    Third Prize – Duo adventure pack - Valued at $481

    Fourth Prize – Premium hamper pack - Valued at $434

    Fifth Prize – Bumper hamper pack - Valued at $225

    Sixth Prize – Goodie Bag – Valued at $135

    The full terms and conditions for the Raffle are set out below. These will be hosted on the givealittle website, and available by post if requested.

    Full Terms and Conditions for Supporting Elyse & DIPG awareness Raffle 2016

    Supporting Elyse & DIPG awareness Raffle 2016 (the “Raffle”) is conducted according to the rules of section 367(1) of the Gambling Act 2003

    Promoter: Supporting Elyse/Cause

    Responsible Person: Victoria Beacock.

    All profits raised from the Raffle will go towards the parents of Elyse Johnson via


    1. By entering the Raffle, you agree to be bound by these Terms and Conditions. Any Raffle entry and participation instructions form part of these Terms and Conditions. Any entries not complying with these Terms and Conditions will not be valid.

    2. This Raffle is open only to individuals aged 16 years or over who live in New Zealand. Any person who has entered the Raffle and who is found to be under 16 years of age will automatically forfeit any prize. The Promoter reserves the right to require proof of identity and age.

    3. The Raffle is not open to any company involved with running the Raffle.

    4. The cost of each entry into the Raffle is $5 per ticket.

    5. The Promoter will send a maximum of 30 tickets to individuals in an initial mailing. Tickets will be available for purchase via the Supporting Elyse Facebook page (…) from 1st June 16 to 28th July 16 (both dates inclusive) subject to availability. Minimum number of tickets per mailing x5.

    6. Additional tickets may be requested by emailing The amount of additional tickets sent out will be in the absolute discretion of the Promoter.

    7. Payment for participation in the Raffle must be made in advance and can be made by cash or online by credit card or Internet banking Payment cannot be accepted over the telephone. If making payment for participation in the raffle made via the givealittle website, you must provide your details and how many tickets you wish to purchase in the ‘Leave a comment’ section.

    8. The prizes are as described on the givealittle website at and on leaflets accompanying tickets sent by post. Details of the prizes and of prize specific terms and conditions are also available by post on request to the Promoter at

    9. The closing date is 28th July 2016 at 18:00. Tickets requested after this date will not be entered into the draw and monies will be treated as a donation.

    10. The Raffle draw will take place on 29th July 2016 at 8:10am.

    11. The winning entries will be selected from all entries received by the closing date and prizes will be awarded in order of selection. Only tickets for which full payment has been received will be eligible to win a prize.

    12. Prizes are subject to availability and the Promoter reserves the right to substitute any prize with another prize of equal or greater value. Prizes are non-transferable, non-negotiable and except where expressly stated no cash alternative will be available. The person named on the Raffle ticket stub will be the only person entitled to the prize.

    13. Any cash prizes will be transferred directly into the winners’ bank accounts or paid by cheque (at the Promoter’s discretion) within 28 days of the draw.

    14. Winners will be announced by More FM Taupo on the Andrew Leiataua Breakfast Show at 8:10 on the 29th July 2016 and notified by telephone or email within 7 days of the draw.

    15. A list of the names, surnames and location of winners will be available at and published in the Taupo Times on the 5th August 2016

    16. By entering the Raffle you agree to the Promoter using your title, surname and location in relation to you being a winner of the Raffle, including on the Promoter’s website at and and on promotional materials relating to the Raffle and related activities.

    17. The Promoter will only use your personal information for the purpose of administering the Raffle.

    18. The Promoter reserves the right to reject your entry and/or award any prize to an alternative winner if the Promoter has grounds to believe that you have breached any of these Terms and Conditions, acted fraudulently or illegally, or on other reasonable grounds and the Promoter shall have no liability to you for any loss or damage arising from the Promoter exercising such rights. The Promoter shall return any amounts already paid by any entrant found to be under 16, but is not liable to return any amounts already paid by any other entrant, and any such refund the Promoter makes will be solely in the Promoter’s discretion.

    19. If:

    • a prize cannot be paid or delivered (as applicable) using the details provided to the Promoter; or

    • any cheque payment from the Promoter remains uncashed;

    after 3 months of the date of the draw, this prize will be forfeited.

    20. The Promoter reserves the right to modify, cancel, terminate or suspend the Raffle in whole or in part in the Promoter’s sole discretion.

    21. Subject to paragraph 22, the Promoter shall not be liable for:

    • Raffle tickets, entries, communications or prizes which are lost, stolen or delayed in the post, damaged or illegible, from which the prize winner or entrant cannot be identified or, in the case of postal entries, which have insufficient postage (proof of posting is not proof of receipt);

    • any late bank payments;

    • the Promoter’s failure or inability to contact you and/or award any prize due to any errors, omissions or inaccuracies in the contact or bank details you have provided or your failure to update these if they change;

    • loss or damage incurred by you in connection with your participation in the Raffle or your use of any prize; or

    • any failure or delay beyond the Promoter’s reasonable control.

    22. Nothing in these terms and conditions shall limit the Promoter’s liability for death or personal injury caused by its negligence, fraud or for any other matter for which liability may not be limited by law.

    23. The Promoter may amend these terms and conditions at any time, but will notify you of significant changes before these come into effect.

    24. These terms and conditions are governed by New Zealand law and entrants submit to the exclusive jurisdiction of the New Zealand courts.

    25. The Promoter’s decision in all matters relating to the Raffle is final. The Promoter operates a complaints and disputes procedure which is available by request to

    26. The Promoter is committed to operating the Raffle in a socially responsible way. If you or a family member feel that you are experiencing problems with gambling, you can seek advice and support from Problem Gambling Foundation of New Zealand via their website at or from the Problem Gambling Foundation of New Zealand helpline on 0800 664 262.

    27. If you have any queries about the Raffle please contact the Promoter by emailing


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  • TBL-12 medicine

      23 April 2016
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    Elyse has started taking a new medicine called TBL-12.

    TBL-12 was originally manufactured in Australia, then moved to Vanuatu to be closer to the raw material source. There have been a number of people who have been diagnosed as "end stage" that are taking TBL-12 that are happy to be contacted about how this product has helped them.

    TBL-12 is a natural product made out of marine ingredients, with the main ingredient being bêche-de-mer (sea cucumber). It works by modulating the immune system, which in turn helps fight cancer and other diseases.

    In other words, TBL-12 treats the causes by improving the immune system, whereas conventional treatments treat the symptoms. In many cases, this is the reason why diseases tend to reoccur, because the underlying cause has not been addressed.

    TBL-12 is owned and produced by the company Unicorn Pacific Limited which is based out of Vanuatu.

    TBL-12 has been undergoing phase II clinical trials in the USA. The trials are on Multiple Myeloma (Bone Cancer) and in May 2012, TBL-12 received approval for orphan indication with the FDA. It is the first natural product to be granted orphan indication as a cancer drug with the FDA.

    One box of 52 tubs (one months supply) costs US$770 NZD $1124.17

    Your donation will help fund this cost.

    We will keep you updated with Elyses progress. Thank you for your support.

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  • Elyses Story

      22 April 2016

    DIPG (Diffuse Intrinsic Pontine Glioma) is a disease which strikes at the heart of childhood and it is a disease in desperate need of a cure.

    By the time symptoms are recognized the victim is already at the end of their precious short life.

    Please copy the link for this video and help raise awareness of DIPG in children.

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