Supatra Emily Adler
2005 - 2012
It is with a heavy heart and deep sadness that I sit here and write about the death of my daughter Supatra Emily Adler. Supatra passed away peacefully at her home with her loving parents and dear brother, Jason whom she loved so much on 5 June 2012. Supatra's death has been a tremendous shock to us as her condition deteriorated quite rapidly over the course of the last two weeks.
As parents we did everything we could for Supatra who was diagnosed with a rare and always fatal Diffuse Intrinsic Pontine Glioma (DIPG) brain stem tumour. After Supatra's diagnosis we were told to celebrate her birthday early, which was only a few months away but we were determined to try and save her. Supatra never complained about her condition and took her medications and treatment with great courage, determination and beautiful positive spirit. Supatra under took several treatments to include an experimental treatment in the USA, took handful of pills and numerous required supplements daily with no fuss nor complaint. The courage and strength that Supatra showed over her 16 month fight was admired by all who knew her, most of all her parents. Supatra will be greatly missed and we as parents are fighting to come to grips with our loss.
In due course we will give some more details of her last few weeks alive so that it may continue to help other parents with DIPG children. Additionally, we will also update everyone on how we will distribute any left over donated funds that we were raising to help fund her treatment costs. If you would like to make a donation to help support research into Child brain cancer then please click on the Just Giving link below.
15 June 2012
Note: I have had to change the just giving link and page as I used an old charity name and number. Earlier this year the Joseph Foote Fundraising Trust merged with the larger Brain Tumour UK charity. I have been assured that past money raised and future money raised through the link above and in Supatra's name will go towards DIPG tumour research, as per my wishes. Thank you for your support.
This blog is dedicated to our beautiful daughter Supatra Emily Adler who has been diagnosed with a Grade IV Diffuse Intrinsic Pontine Glioma (DIPG) brain stem tumour at the age of five. Supatra's diagnosis was revealed to us on 26 Jan 11 on my wife's birthday. It was the worst day of our lives and we continue to struggle with the reality of her condition.
In August 2011 we decided to set-up this blog for three reasons. First, to provide us with an effective means to communicate Supatra's progress and health to friends and family members as we undertake a US FDA approved Phase II privately funded experimental clinical trial for her.
Second, I hope this blog will provide other parents of newly diagnosed DIPG children some insight as to what we have gone through. Unfortunately, because we started this blog months after her diagnosis the early entries have been drafted from memory and some details and the emotions we were feeling at the time may not be there or show through. We have consumed countless of hours searching and reading up on this cancer, prognoses, available clinical trials and alternative treatments and hope that maybe this diary will help save you some valuable time. I hope that our posts will show what we used for complementary and experimental treatments so that you can see the merits or not of trying them yourselves on your child.
OUR FAMILY'S APPEAL
Third, we hope through Supatra's story and this blog we will be able to raise enough money for our trip to the USA and Supatra's treatment with antineoplastons at the Burzynski Clinic. Since there are not many independent and detailed stories of children undergoing Dr. Burzynski's antineoplaston treatment, I hope to add to that small repertoire so that you can make a better informed decision on whether or not to try this treatment for your child. Please don't judge us for going down this private experimental route as our doctors have given us no other hope, no clinical trials, and have only recommended palliative care. But we are not giving up!
Unfortunately, this private treatment, that is now approved for Phase III clinical trials, is very expensive but no more so then Chemo or other non-clinical trial therapies. Treatment can last anywhere from 1-3 years and cost upwards of 200,000 pounds or more in total. Therefore, our family needs help in order to provide this last measure of hope to our daughter. Please help us and our friends raise funds for Supatra's Fairy Fund.
***All funds raised through the paypal donation button or off-line but not used to support Supatra's treatment and associated medical costs will be donated to several worthy charities that have helped us along the way.
***All funds raised through the virginmoneygiving page not used for Supatra's treatment will revert to the Joseph Foote Trust and be used to further brain tumour research initiatives that will hopefully help future children with brain tumours.
I will try to keep this diary as up to date as possible so please check back from time to time.
Thank you all so much,
Love from Jorg, Punny, Supatra, and Jason