Fight to save Ethan Desai
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Ethan is 6 years young and in Sep 2019, our world was shattered after learning that our beautiful boy and big brother to Ahaan has a rare and aggressive brain tumour.
Ethan not only loves playing Footy, Tennis, Cricket and Basketball, he also values his time as we sit as a family and watch these together, whether it be in front of the TV at home or at the Stadium cheering our teams on.
It is breaking our hearts to see our little boy continually deteriorate at a rapid rate and with no current available treatments here in Australia we are forced to look for help overseas. My wife and I are determined to do everything in our power to get our son the help and treatment he needs, unfortunately the cost of the clinical trials for CAR-T Cell alone commence at $330,000 USD and that’s just the deposit, on top of this is our living expenses including air fares & accommodation in the USA along with further medical treatments in the USA if any complications arise during the trail.
Any funding received will enable the chance to get Ethan onto this clinical trial, which at this point is his only hope of survival as it is specifically designed to target the type of brain tumour that Ethan has been diagnosed with.
Ethan’s story
In the week leading to Grand Final Day (VIC AFL) we noticed Ethan was losing his balance, slurred speech & drooling and was not able to do activities he would normally do with ease. His symptoms began to rapidly escalate so we went straight to the doctor. After assessing Ethan, we rushed to the hospital where they preformed a number of tests and subsequently delivered the news that no parent should ever have to hear... Ethan had Diffuse Intrinsic Pontine Glioma (DIPG) an extremely rare and aggressive childhood Cancer. Which kills about 20 Australian children a year, and has an average survival of just 9 months from diagnosis.
DIPG almost exclusively attacks our youngest (children under 12) and most vulnerable, who should have their whole lives ahead of them and there is currently no cure. Shockingly, despite all the advances in Cancer treatments, DIPG treatment is the same as it was 40 years ago. Due to its location in the brain stem surgery is not an option and there is little other than radiation, which is not overly successful.
Thankfully, over the last 18 months there have been promising advances in overseas clinical trials. There are two lines of therapy for which there is reasonable data indicating potential effectiveness. One is CAR-T Cell Therapy, the other is ONC201 neither of which is at present available in Australia. The CAR-T Cell trials are being carried out in Stanford and Seattle, the ONC201 trials are being carried out in a number of units including Cleveland Clinic.
ONC2O1 has been shown to induce tumour cells to selectively kill themselves, leading to a reduction in tumour size and prevention of tumour growth. Unfortunately, ONC201 and other similar trials are not yet available in Australia and will be some time away.. but with DIPG, time is limited and we don't have a day to waste. This tumour is savage... words can not describe how heart breaking it is to watch him decline in just a few weeks... From cricket and playing footy & basketball with his me to stumbling, slurring his speech and needing regular sleep. We are determined to fight and give Ethan every possible chance.
We have created this go fund me page with two things in mind- firstly, to give Ethan his best chance of survival and quality of life by accessing these new drugs through overseas clinical trials or on a compassionate basis. This will be costly, but it is our hope. Secondly, we would like to donate any funds not required to improve Ethan's prognosis and quality of life, to The Cure Starts Now, who carry out much needed research, that will help other children and their families combat this horrible disease.
We are forever grateful for any contribution you can make.
Thank you for your support.
Sincerely grateful
Pranav, Shivani, Ethan & Ahaan
Ethan is 6 years young and in Sep 2019, our world was shattered after learning that our beautiful boy and big brother to Ahaan has a rare and aggressive brain tumour.
Ethan not only loves playing Footy, Tennis, Cricket and Basketball, he also values his time as we sit as a family and watch these together, whether it be in front of the TV at home or at the Stadium cheering our teams on.
It is breaking our hearts to see our little boy continually deteriorate at a rapid rate and with no current available treatments here in Australia we are forced to look for help overseas. My wife and I are determined to do everything in our power to get our son the help and treatment he needs, unfortunately the cost of the clinical trials for CAR-T Cell alone commence at $330,000 USD and that’s just the deposit, on top of this is our living expenses including air fares & accommodation in the USA along with further medical treatments in the USA if any complications arise during the trail.
Any funding received will enable the chance to get Ethan onto this clinical trial, which at this point is his only hope of survival as it is specifically designed to target the type of brain tumour that Ethan has been diagnosed with.
Ethan’s story
In the week leading to Grand Final Day (VIC AFL) we noticed Ethan was losing his balance, slurred speech & drooling and was not able to do activities he would normally do with ease. His symptoms began to rapidly escalate so we went straight to the doctor. After assessing Ethan, we rushed to the hospital where they preformed a number of tests and subsequently delivered the news that no parent should ever have to hear... Ethan had Diffuse Intrinsic Pontine Glioma (DIPG) an extremely rare and aggressive childhood Cancer. Which kills about 20 Australian children a year, and has an average survival of just 9 months from diagnosis.
DIPG almost exclusively attacks our youngest (children under 12) and most vulnerable, who should have their whole lives ahead of them and there is currently no cure. Shockingly, despite all the advances in Cancer treatments, DIPG treatment is the same as it was 40 years ago. Due to its location in the brain stem surgery is not an option and there is little other than radiation, which is not overly successful.
Thankfully, over the last 18 months there have been promising advances in overseas clinical trials. There are two lines of therapy for which there is reasonable data indicating potential effectiveness. One is CAR-T Cell Therapy, the other is ONC201 neither of which is at present available in Australia. The CAR-T Cell trials are being carried out in Stanford and Seattle, the ONC201 trials are being carried out in a number of units including Cleveland Clinic.
ONC2O1 has been shown to induce tumour cells to selectively kill themselves, leading to a reduction in tumour size and prevention of tumour growth. Unfortunately, ONC201 and other similar trials are not yet available in Australia and will be some time away.. but with DIPG, time is limited and we don't have a day to waste. This tumour is savage... words can not describe how heart breaking it is to watch him decline in just a few weeks... From cricket and playing footy & basketball with his me to stumbling, slurring his speech and needing regular sleep. We are determined to fight and give Ethan every possible chance.
We have created this go fund me page with two things in mind- firstly, to give Ethan his best chance of survival and quality of life by accessing these new drugs through overseas clinical trials or on a compassionate basis. This will be costly, but it is our hope. Secondly, we would like to donate any funds not required to improve Ethan's prognosis and quality of life, to The Cure Starts Now, who carry out much needed research, that will help other children and their families combat this horrible disease.
We are forever grateful for any contribution you can make.
Thank you for your support.
Sincerely grateful
Pranav, Shivani, Ethan & Ahaan
Organizer
Pranav Desai
Organizer
Cocoroc VIC
