Fight4Pali #TeamPali

We are raising money for potential life saving treatment available in Germany for our beloved Pali.

 

The lives of our whole family changed when he 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.

 

Pali spent 6 days at Leeds General Infirmary without his family by his side due to the Covid-19 pandemic. He had to endure numerous scans, brain surgery followed by staples in his head and difficult conversations with medical professionals by himself. He coped amazingly well and was finally discharged to go home to his wife and two little girls aged 1 and 3 years old.

 

 

 

 

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. Those 3 weeks were the most gruelling any of us have ever experienced and the effects of radiotherapy have hit Pali hard.

 

The past few months have been very distressing for Pali’s family and friends. It has become challenging for us to see our beloved Pali endure weeks of radiotherapy and the side effects that have followed.

 

 

 

 

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 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.

The medication, along with doctors consultations and other potential treatments such as, immunotherapy in Germany which will range around £60,000 per treatment.

 

Therefore, we are looking to raise £120,000 for Pali’s treatment.

 

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.