Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. Our precious five year old daughter Jeda was diagnosed 12/12/2016 with a very aggressive brain cancer called DIPG. This kind of cancer is NOT rare and often occurs in 5-8 year olds. However jeda did NOT have this highly aggressive DIPG cancer. Jeda was born with a low grade Glioma. DIPG was diagnosed without biopsy or even an mri, it’s called an anecdotal diagnosis and not worth the paper it’s written on. One of the points of real change for children diagnosed with terminal cancer is to ensure an anecdotal diagnosis on sick and dying children never happens anymore in NZ. We were told we had no choices other than palliative care!!!!!! ( from a ct scan) as very little research is being done on this type of ‘rare’ cancer. Plenty of research is done for low grade gliomas and what jeda was actually diagnosed with ganglioglioma. . However because jeda was not terminally diagnosed with anything other than DIPG, jeda had zero rights of treatment, quality of care, or even I kid you not even iv antibiotics. We are fighting back and seeking support to help save many jedas that came after jeda from this horrible disease by ensuring that sick children (terminally diagnosed ) are entitled to get a second opinion, receive treatments abroad and be allowed hospital facilitation abroad. I can assure anyone who is reading this ( even now 1.5 years after jeda died ) that the jedawhitelegacy is working tirelessly on getting better standard of care for sick and terminally diagnosed children with cancer. If your child has recently been diagnosed with a life limiting illness, there is plenty that can be done. I can help. My ph no is 0210470901 (tel:0210470901). I’m passionate, I care and I know what it’s like to watch your child lose function and the will to live.