Story
Welcome to our Just Giving Page. My Mum and I are doing a sponsored 7,000ft Sky-Dive on Saturday 15th October, in order to raise funds for life saving treatment, for our family friend Pali.
Pali has been diagnosed with an aggressive tumour called Diffuse Midline Glioma. The treatment available in the UK is limited due to the position and complexity of the tumour, therefore they’ve had to seek advance treatment in Germany, which is very costly.
For those who know me, I’m a little bit of a thrill seeker, however my mum, not so much! This is an extremely nerve-wracking experience for her.
Initially, this jump was only going to be done by me alone, but after my mum walked in on us planning it, we had a light bulb moment and roped her in.
After very little convincing, my mum agreed to join me. Then the penny dropped! And the fear set in as she realised what she agreed to. It’s safe to say she’s petrified. But it’s for Pali…..that’s one thing she’s sure about and that is to help him.
My aunty Joshna, who is a good friend of Pali’s sister, and my dad are kindly paying for the jump, so all proceeds raised will be going towards Pali’s treatment.
So please dig deep and sponsor us…..we’re jumping out of a plane.
Thank you in advance,
Davina and Angelina.
Here is more about Pali’s story.
The lives of the whole Uppal family changed when Pali started suffering from headaches around April 2021. He went to A&E for a CT scan, unfortunately the scan was not carried out and he was simply diagnosed with suffering from tension headaches. As a family we urged him to book a private scan as soon as possible for reassurance.
He attended the private scan on the 27th May 2021 and a mass had been located on the back of the brain.
Pali was rushed to A&E and within a few hours the neurosurgeons decided that brain surgery was necessary the next afternoon.
During surgery, the fluid on the brain was drained using a procedure called ETV and a biopsy of the mass was taken from the back of the brain.
The following week, we received the results of his biopsy - the worst news yet! The biopsy revealed a cancerous tumour called Diffuse Midline Glioma, Grade 4 H3K27M mutation. This is a highly aggressive tumour that is particularly resistant to conventional treatment. Due to the position and depth of the tumour in the brainstem doctors concluded that, at present it would be inoperable.
The treatment options available in the UK for this particular tumour are very limited. However, Pali started the standard treatment of advanced radiotherapy for a period of 3 weeks from the end of June through to Mid July.
Pali is our world, he is the rock of our family as a father, husband, son, brother and dear friend to so many. He has a heart of gold and never fails to put others before himself, he is our inspiration every day, we are so proud of him.
We have discussed our treatment proposal with Pali’s medical team here in the UK and it has been agreed that in light of the very limited treatment options available in the UK, we will do the following:
ONC201 - a Phase II trial drug designed to fight the exact mutation of Pali’s tumour that has shown very promising clinical results. The drug alone will cost £5,000 per month and, if effective, will require long term use.
Up to April 2022 the ONC201 and all the other holistic treatments have been working and did shrink the tumour & pressure, however unfortunately the scan results most recently on 23rd June, showed a increased growth in the tumour located in the brainstem. Therefore we are back to looking at a new way of shrinking/eradicating this tumour which we are now looking in America at a specialist clinic.
These innovative treatments are all very costly and far more than we can afford as a family. We are therefore asking you to kindly support our efforts to obtain this life saving treatment by contributing to this page, this really is the only option we have and wouldn’t be able to do this without your support.
Any donation is much appreciated, this treatment is our only option and we can’t stress enough how much your donation counts. We as a family will do whatever it takes to help him and we can’t thank you enough in advance for becoming a part of our extended family and joining us in our fight #TeamPali
