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Supporting Elyse vs DIPG

  • 10th August 2021 UPDATE

      10 August 2021
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    Earlier this month Elyse had her shunt replaced after complications with drainage. Unfortunately since then an infection has caused further serious complications and a sepsis infection which medical specialists are struggling to pinpoint.

    So far Elyse has been to 3 different hospitals in 2 days transported by Helicopter 🚁

    Endured:

    3x iv lineS

    1x mid-line and 1x PICC line

    Lumbar puncture

    Spinal tap

    3x Finger pricks

    4x Blood test

    2x General anaesthetic

    1x CT

    2-6 weeks of antibiotics

    6 Nights in hospital so far

    2 x X-rays

    And has been asleep for 48hrs and more test today

    Please keep her in your thoughts and send some healing vibes, fluids antibiotics and medications don't seem to be helping and everyone is a bit stumped!

    Thank you, your ongoing support means the world to the family!

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  • 5 YEARS

      7 April 2021
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    🎗🎗8th April 2021🎗🎗

    FIVE years since Elyse was diagnosed with DIPG at the age of just 2 1/2.

    Also the day that doctors told her family she wouldn't see her 3rd birthday.

    A huge milestone which she has fought so hard to reach with no radiotherapy and all natural alternative medicines.

    Elyse continues to show signs of improvement and her scans reflect this with the tumor size gradually reducing.

    Tilray CBD THC Oil: (Medicinal Cannabis Oil) Elyses medicine, still remains on the non government funded list and continues to cost the family thousands of dollars every month. No parent of a child suffering any life threatening disease should have to pay hundreds of thousands of dollars to keep their child alive.

    Please help by making a heartfelt donation and share her story. Thank you everyone for your ongoing support, making Elyses journey possible. ❤ #SupportingElysevsDIPG #FightDIPG #BeTheHope

    💛🎗Thank you everyone for all your love and support!🎗💛

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  • UPDATE 4 years, 11 months, 10 days past DX

      17 March 2021
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    Today Elyse had a scheduled MRI at Auckland Starship Hospital. Her last scan back in July 2020 showed reduction all round along with the cyst on her spinal cord had shrunk.

    Well today's scan again showed that there has been continued reduction and the cyst was barely traceable!

    Tomorrow Elyse will be having a lumbar puncture to take a spinal fluid sample which will be sent to Montreal, Canada where a DIPG specialist will take a closer look at the cells in her spinal fluid. This will hopefully give us a better idea of the characteristics of the DIPG and how the medicines are impacting the tumor.

    Her Dr is becoming more interested in her natural alternative medicines and are supporting this research. His words being “What we are doing is working.”

    Her hips have healed extremely well after the removal of the metal screws and plates back in December 2020.

    She is becoming more independent with her eating and is ready to be weaned off her feeding tube.

    Next month will be Elyses 5th year past DX. Only 1% of all DIPG warriors reach this milestone.

    Elyse is receiving on a daily basis, all of the natural alternative medicines which include Medicinal Cannabis Tilray 1:1, TBL-12, a healthy diet, Frankincense Extract, Turmeric and more. (Refer to the 'About' Section so see the full list of what is working for Elyse).

    Thank you everyone for your ongoing love and support. ❤

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  • 18th February 2021 Update

      18 February 2021

    Elyse is continuing to improve day by day. Especially after a whole month at The Wilson Centre where she worked on her motor skills, crawling, riding a bike and walking. All building up her strength, confidence and character. The teachers noted how great her attention span is and how she loved playing, she worked super hard and displayed how proud she was of herself. You ROCK Elyse!

    Elyse is absolutely beaming and the results from just one month of rehab are astonishing. A MASSIVE Thank you to all of the team at The Wilson Centre ❤

    💛🎗Thank you everyone for all your love and support!🎗💛

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  • 15 December 2020 ~ 4 years, 8 months, 8 days past DX Update.

      15 December 2020
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    On December 7th, Elyse had the metalwork in her hips removed successfully. A few days later she fell very ill and was rushed to Starship Hospital for emergency surgery. The shunt which was inserted to help the spinal fluid bypass the tumour had stopped working. The surgeons successfully repaired it and she is back and ready to rock and roll, sporting a snazzy undercut ready for the hot sticky summer we are about to have 😃

    💛🎗Thank you everyone for all your love and support!🎗💛

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    • 16/12/2020 by Jean

      Keep fighting little angel - you are going to be ok ❤

  • 25th November 2020 ~ 4 years, 7 months, 18 days past DX

      25 November 2020

    Elyse is continuing to progressively improve as the months go by. Every update she has passed some more developmental milestones. She is beginning to say words clearly, has mastered driving herself around in her new electric wheelchair and is managing to eat an increased variety of foods, moving her away from tube feeding.

    🎉🎂On December 2nd, Elyse will be turning 7! Woohoo! Another year older and another year stronger!🎂🎉

    On December 7th, Elyse will be going to Waikato Hospital for the removal of the metalwork in her hips which was inserted during her hip surgery two years ago. Following this she will be doing rehab to build up her strength, progressively moving her towards walking again!

    💛🎗Thank you everyone for all your love and support!🎗💛

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  • 4 years, 1 month, 17 days past DX

      24 May 2020

    24th May 2020

    Elyse is growing in so many ways and every day making us proud. She is regaining movement in all of her fingers. Something that DIPG stole from her when it was at its worst. She is learning to write and even learning basic sign language. One of the most sweetest things to hear is the sound of her voice, which is gradually starting to return. Elyse you are making everyone so proud.

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  • 4 Years past DX fighting DIPG

      8 April 2020

    The 8th April marks a very significant milestone of Elyses fight against DIPG. On this day in 2016, 4 years ago, we were told the news no parent wants to ever hear. There is nothing we can do, she has 3-9 months to live.

    Elyse rapidly lost the ability to walk, talk and eat in just a few short months which was frightening to witness. But after a long hard battle, years of research, fundraising, sheer determination, love, tears and so much hope for not just Elyse but many other families battling DIPG, Elyse is defeating the odds stacked so heavily against her.

    Thank you so much to everyone for your ongoing love and support for Elyse during this long hard fight against DIPG.

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  • Elyse starts RDA (riding for disabled)

      9 March 2020

    Elyse has now started RDA (Riding for the disabled). This is an alternative class in place of her Physical Education classes at school.

    RDA provides Elyse with a therapeutic horse riding program to increase her confidence and self esteem, muscle strength and coordination. Every Thursday Elyse travels to the RDA Center with her teacher aid. Her first class proved a hit! At first Elyse was a little unsure, but quickly warmed to the experience and loved every minute!

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  • Elyse at school full time!

      4 March 2020
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    Elyse has recently upped her school days to 5 days a week and also riding for disabled! So awesome to see the massive improvements with everything, coordination, vision, physio she's blowing everyone away! It's so cool to see all the hard work and the amazing team around her pushing her towards her full potential. Elyse you're a wee gem and thriving! We have now cut her tube feeds back as she is eating more, her hips are looking great and plates will be coming out next month then back to rehab to work on walking, walker will be here in few weeks to get started 😁

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    • 05/03/2020 by Luda Graves

      Great to hear. Thanks for sharing Elyse's progress. Amazing effort by Elyse and her family. xox

  • Elyse Starts School!

      14 February 2020
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    The start of February 2020 saw Elyse's biggest milestone since we announced the news of her tumors amazing reduction in size.

    Elyse Started School!

    It has been 3 years, 10 months, 7 days since the doctors said she wouldn't see her 3rd birthday. And here she is! 6 years old, and smashing those milestones!

    No Radiation and all natural alternative medicines.

    Her teachers have said she is on the same learning par as all of her class mates and Elyse is just loving being at school.

    The Medicinal Cannabis which Elyse is taking on a daily basis is still to date non-government funded. Hopefully with the new cannabis laws coming in to place we will see a reduction in cost.

    Thank you to all of Elyse's followers! Please share her story! https://www.facebook.com/SupportingElyse/

    A full list of what she is taking can be found in the 'About' section on her facebook page.

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  • We need your help - Supporting Elyse vs DIPG

      10 December 2019
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    Hi Everyone ⚠️ PLEASE READ ⚠️ Elyse is still fighting so hard and right now and we need help more than ever. There is no way I can stop her unique treatment for her DIPG but if we don't have the funds we don't have any choice. 😔 We only have four weeks left until her funds are all gone.

    We really didn't want to have to ask but we are running out of ideas to fund Elyses Medicine. It's costing $1000 every week because Tilray is not government funded.

    I've contacted newspapers and magazines since her last MRI to announce the shrinkage of her tumor and her progress but no one has responded. We have exhausted every avenue with grants, and the fundraisers are becoming hard to do after four continuous years, which the Taupo and wider communities and even overseas have been beyond amazing! But we can’t sit back and stop when what we are doing is working and Elyse is fighting so hard too. So I'm asking anyone and everyone, family, friends if you can please make a donation. It all adds up fast if we have enough people on board. And please share and spread the word or even if anyone knows someone who works in business and would be willing to make a generous donation to help save my daughter.

    To date her medicines have cost a whopping $170,000 on medicines. This shouldn’t be the case. It’s so unfair that this medicine that is shrinking her tumor and saving her life is costing so much money, and will continue to do so unless the government makes some serious changes!

    Please share the Supporting Elyse Story, and thank you for taking the time to read this.

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  • 15% Reduction in Tumor size since it was at its largest!

      4 November 2019
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    Today Elyse had her 3 monthly MRI scan (which was postponed due to strikes). And the results revealed something which we already knew in our hearts. The tumor is still continuing to shrink!

    Since July 17, when the DIPG tumor was at its biggest, it has shrunk by a whopping 15%. Elyse's progress is clear to everyone who has been following her journey. Her physical strength is improving immensely and her strong beautiful character is beaming through.

    Elyse is still receiving on a daily basis, all of the natural alternative medicines which include Medicinal Cannabis Tilray 1:1, TBL-12, Liquid Hope (Organic food) Francincense Extract, Turmeric and more. (Refer to the 'About' Section so see the full list of what is working for Elyse.

    A massive thank you Elyses support network and everyone who has donated and volunteered to the Supporting Elyse vs DIPG cause. Your continued support is priceless 💛🎗

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  • Elyse starts School visits!

      23 October 2019
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    Today marked a massive milestone for Elyse's progress. Elyse started her school visits today in preparation for the beginning of the new school year, Feb 2020. School visits will happen every Wednesday until the end of this school year. Elyse will experience what it is like in the class room and take part in entry level learning. The school are being amazingly supportive and facilitating in every way possible for Elyse. They will be installing specialist equipment such as a ceiling hoist, swing and other items to accommodate Elyse in the best way possible to assist her learning. (Pictured with her cousin Amelia and big brother Blake).

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  • 3 years since diagnosis

      26 March 2019
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    The 8th April 2019 marks three years since Elyse was diagnosed with DIPG. She will also be at Starship Children’s Hospital for an MRI to monitor the size of her tumor.

    The little Warrior Princess is continuing to show signs of improvement and her symptoms subsiding in her day to day activities. No radiotherapy and all natural alternative medicines. No Big Pharma 'medicine'.

    Elyse still has a long road & fight ahead of her but this is such a massively promising path that she is heading down. This is not a journey she is on by herself, she is leading the way for other family's fighting the DIPG monster too.

    Tilray CBD THC Oil: (Medicinal Cannabis Oil) Elyses medicine, is not government funded and is costing the family $3.5 thousand dollars every month.

    To date, approximately $120,000 has been raised and spent on her alternative medicines. No parent of a child suffering any life threatening disease should have to pay hundreds of thousands of dollars just to keep their child alive.

    Please help by making a heartfelt donation and share her story. Thank you everyone for your ongoing support, making Elyses journey possible. <3 #SupportingElyse #FightDIPG #BeTheHope

    www.facebook.com/SupportingElyse/

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  • Elyse gains her swallowing reflex

      22 March 2019

    We are absolutely blown away! Elyse just finished her whole bowl full of vegetable lasange without spitting it everywhere, looks like she's got her swallow reflex back!! Woohoo!! She hasn't had a proper meal since September 2016

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  • Fight DIPG Christmas Appeal 2018

      15 December 2018
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    Almost three years since Elyse was diagnosed with DIPG the little warrior Princess is continuing to show signs of improvement and her symptoms subsiding. No radiotherapy and all natural alternative medicines. No Big Pharma 'medicine'.

    Elyse still has a long road & fight ahead of her but this is such a massively promising path that she is heading down. This is not a journey she is on by herself, she is leading the way for other family's fighting the DIPG monster too.

    Please help by making a heartfelt donation and share her story 🎗️Thank you everyone for your ongoing support <3 #SupportingElyse #FightDIPG #ChristmasAppeal2018 https://www.facebook.com/SupportingElyse/

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  • Elyse celebrates her 5th Birthday!

      7 December 2018
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    December 2nd 2018

    Massive milestone! Elyse celebrated her 5th birthday with family and friends.

    Happy Birthday Princess 💖

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  • Alternative Medicines Continue to Shrink DIPG!

      8 October 2018
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    Elyse had an MRI brain and spinal scan today at Starship - Auckland. The results were fantastic! 2 1/2 years on. No radiotherapy and all natural alternative medicines. Her tumor is continuing to reduce in size! Her symptoms are gradually subsiding and Elyse is slowly and steadily regaining her mobility.

    Elyse still has a long road & fight ahead of her but this is such a promising path that she is heading down. This is not a journey she is on by herself, she is leading the way for other family's fighting the DIPG monster too.

    Thank you everyone for your ongoing support <3

    Please share her story, make a donation, anything big or small helps us to make sure Elyse receives her much needed medicine.

    Supporting Elyse Team XX

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  • 9th April 2018 - Elyse's MRI Results

      9 April 2018
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    Elyse has just had her third MRI scan at Starship hospital in a row which has shown a REDUCTION of the tumor! The doctors are stunned and have told us to “keep doing what we’re doing” and have booked Elyse in for a follow up scan in October 18. This is without a doubt a direct result of her alternative medicines she is being treated with - Medicinal Cannabis, TBL-12, Boswellia carterii oil, copaiba oil, vitamin C, dandelion and organic keto food diet.

    The paediatrician said - “I don’t think this has ever happened before without radiation…they don’t just shrink by themselves”.

    This (medicinal cannabis)​ is a medicine that treats the problem and doesn’t just mask the symptoms, and it should be free or at least subsidised! Elyse is now trying to eat by herself again and is being fitted for a standing frame. Although her diagnosis is still classed as terminal, her paediatrician has moved her to her regular patient list and doesn’t feel she needs to have regular check-ups because of how well she is doing.

    Please share her story, make a donation, anything big or small helps us to make sure Elyse receives her medicine, and please tell the world that Medicinal cannabis is an effective means of treating brain tumors! With your help we can in turn help educate other family's fighting DIPG too!

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  • Supporting Elyse Emergency Fund

      22 March 2018
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    The Supporting Elyse Team has today launched the Supporting Elyse Emergency Fund as an urgent fundraising appeal to assist the family with the huge cost of Elyse's medicine. Just 20 days of her medicine is currently costing a whopping NZD$1,480.00!

    That's $74 per day!

    To date all of her funds have been used, and the next 12 months the family are looking at costs upwards of $30,000.00 for the Tilray oil alone. The Liquid hope is another $1,000.00 per month and the TBL-12 (Sea cucumber) $1,000.00 per month also. That's $54,000.00+ per year.

    We are committed to providing this support for as long as it’s needed, to ensure that Elyse receives the medicine that is stabilising her aggressive DIPG brain tumor.

    You can read more about the Supporting Elyse Cause and her progress on her facebook page Supporting Elyse.

    Thank you for your generosity in helping Elyse’s family to help pay for her non-government funded medicine.

    Contact the Supporting Elyse Team

    For all enquiries regarding fundraising, sponsorship and donations, please contact:

    Vic Beacock

    Phone: +64 27 5110725

    Email: dipgfighterfundraiser@hotmail.com

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  • Update from Elyse's Mum - March 2018

      19 March 2018
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    Elyse is now going back to mainstream kindy and we are seeing improvements everyday. There's been absolutely no decline in her health, just improving and she has been stable since her last scan 8 months ago.

    Next month on the 9th April 18 it will be 2 years since she was diagnosed and we were told she had just weeks to months to live......

    However we have literally run out of money now after her next month of cannabis oil that's costing $3000 a month alone we only have $1500 left from her donations.

    Our fight is not over though. There is a new trial coming to New Zealand and she is suitable if we can keep her on medications and keep her stable in the mean time, it will give her more of a chance to be here to receive treatment.

    We would like to thank everyone for there ongoing help and support.

    Casey & Elyse 😊

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  • Daily dose of meds #allnatural 22months

      7 February 2018
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    Refusing the radiation which the doctors offered and the only means of treatment when Elyse was diagnosed with DIPG 22 months ago was without a doubt the best path her parents could have chosen. Elyse was given 3-9 months to live, devastating news for any parent to hear. And sadly this is what we have witnessed with other family with children diagnosed with DIPG. All passing within just a few month of starting radiation, some just weeks.

    The all natural treatment has not only seen the 'aggressive' tumor stabilised, it is slowly but surely starling to reduce in size.

    The cannabis oil, juice, vitamin-C, oil, TBL-12, liquid hope and boswellia extract are all working together as a super immune booster and cancer cell destroying concoction! The evidence is a glowing picture of health namely Elyse who today met her next milestone which was her first day at preschool! Watch this space!

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