Help Support Jeda's Fight Against DIPG Brain Cancer
Please help us with our daughter Jeda's fight against DIPG brain cancer.
Northland
Our precious six year old daughter Jeda was diagnosed 12/12/2016 with a very aggressive brain cancer called DIPG that lives in the pons. This kind of cancer is NOT rare ( official term is relatively rare) and usually only occurs in 5-8 year olds. But not restricted to these ages. We were told we had little/no choices other than palliative care or radiation as very little research is being done on this type of cancer in the modern main stream system. We are fighting back and seeking support to help save her from the 'locked in' effect of this horrible disease. All donations will be used to help pay for the many treatments that are not funded by government in NZ, Support for family members to visit (thank you family) and the charitable organisations that are supporting us in this nightmare journey. We are lobbying politicians and putting in writing when we can anything that will further the DIPG awareness and be the catalyst for any change within the standard system. DIPG has not come very far in a very long time. The reasons are lack of biopsies, lack of accurate centralised statistical informal on DIPG, lack of effective treatment on offer, lack of funding, lack of education. The nature of this beast can be aggressive and quick, sometimes children may not have many or any symtoms but this may or may not mean you have longer time with your precious one. It doesn't matter how popular, funny, loved, good looking! Your child is that has DIPG. DIPG is indiscriminate.
Aaron White's involvement (page creator)
As Jeda's parents we just cant believe that there is so little that can be done. We have to believe that there will be breakthroughs in the treatment of DIPG conventionally.
Aaron and I want to be proactive and have invested in a water machine that alkalises the water and ionises what goes into her system. We have invested into a machine that works on magnetic and radio and light resonant waves that specifically targets her DIPG cancer cells. We hope that these two machines will dramatically improve jeda quality of life.
Other page links
Latest update
Six months plus post diagnoses Dipg 28 May 2017
Hello hello hello to all our supporters of jeda and our journey.
This will be our final update on give a little and we are closing this page.
It was advised by other parents in similiar situations as ours to set up a gofundme or give a little page so that when life is unbearable at least the financial pressure will be eased.
Cancer is not cheap.
It has been a HUGE journey for all three of us to date. Not having the huge immediate financial burden really helped us. THANK YOU so much. If there was any supporter I didn't thank individually it was because sometimes the system did not display it in date order.
Every decision we have made for jeda has been thoroughly investigated. if we had this most terrible six months + of our lives back again there are many things we would change and glad of many things that went our way. Education has been the biggest tool.
Jeda is doing fantastic.
Significant reduction in tumour.
Jeda will be in school a lot more. She could do with more weight but that's the nature of the beast within.
Friends and family have been amazing support and travelled from all over the world to be with us especcially at the beginning. Thank you for that support. Also to the family friend that was there at diagnosis time we are forever in debt. Thank you for putting your own life on hold and being there for us. And giving generously so much of your time. We are deeply grateful.
Travelling here also is huge in itself thank you family and friends for time and expense.
To all jeda friends thank you for including her and inviting her to parties. It means a lot.
Also for the gifts and beautifully crafted presents, it's extremely thoughtful and kind. Our eyes are now well and truly opened to the other side of how life is for some people. Life will never be taken for granted. We are grateful that we got away without deep grief/ shock for so long.
Every day is a gift, a fresh new wonderful day where ANYTHING is possible.
Thank you to our friends in whangarei that helped ease the unchartered road. It really helped.
Thank you so much supporters of jeda and us and helping to create a DIPG awareness.
The,
DIPG name, diffuse ( all over the place)
Intrinsic ( inside the brain )
Pontine ( in the pons part of brain)
Glioma ( a glial cell in the brain stem named after where the cancer grows ) it's a common brain cancer
DIPG Name is being changed by world health organisation to
diffuse midline glioma. Not sure if it will be DMG
Hopefully that will help the funding to find a CURE
DIPG Be gone. Jeda writes this everywhere on everything.
Special thank you to
Jeda's hypnotherapist Derry
Tish for cranial work
Johnny for homeopathy
Lou for naturpath
All work in whangarei and all on jeda's team. We hope to continue this work on a regular basis into jeda's future.
***Recommend recommend recommend ****
Also thank you to jeda gp in environmental health who took us on helped us get on the right road.
Will post from time to time on caring bridge site. If you wish to follow jeda white journey please find her on caring bridge. im sure she is the only jeda there. Sending back loads of love. Thank you thank you thank you.
Latest donations
Thank you so much for supporting us. We are 6.5 months into this journey and thankfully jeda is well. We are fighting the fight and grateful for every day. Xxx many thanks Clare aaron and sparkle team jedz
Hi caring generous supporters. Thank you so much. So sorry for delay in seeing this and writing a thank you. Jeda will be in school thurs and fri this week. All going well. She misses having the same lunchbox as everyone else but otherwise good, she just wants to be normal and hates being sick or not being able to keep up. We sure appreciate the on going support. Lots of love clare aaron jedz
Thank you so much BNZ for on going support and care. We certainly feel the love. jeda is well. We have undergone a huge family transformation and learning and heeling loads on this journey. Thankful for every day. Grateful for support. xxx lots of love clare aaron jedz
Hi and thank you for donating to our jeda fund. Jeda is at week 10 on Friday as 10 weeks sugar free and plant based food. She is at saturation point with supplements. The dark circles under her eyes are not as bad maybe! We are coping and sure appreciate all the support and encouragement. Loving the support xxxx
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