The family of a brave man who is battling a rare, aggressive, and incurable brain tumour are continuing their appeal for funding for potentially lifesaving treatment.
Mark Downey, 44, from Bolton, was diagnosed with grade 4 glioblastoma in September last year, and he had major brain surgery to remove as much of the tumour as possible.
His family are now hoping to save enough money for him to have treatment abroad which may save his life.
Mark’s sister Steph said: “He went to A&E with a migraine and vomiting.
“He doesn’t normally suffer with headaches or migraines.
"If he had just ignored it, it could have been worse because it had already formed.
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“Mark had no idea it was growing and had no symptoms before this.
“We are all in a state of shock, and this whole journey has been soul-destroying.
'You don’t think of these things until someone is affected by this'
“I would never wish this on anybody."
Following a test, consultants confirmed that Mark had an IDH wild type unmethylated tumour, which means that a person may not benefit from radiotherapy or chemotherapy.
The life expectancy is 12-14 months from diagnosis, and Steph says his symptoms are getting worse every day, and they do not know how long he has left.
Mark started daily radiotherapy on Mondays to Fridays and continued this for 35 sessions, as well as having oral chemotherapy daily.
'Mark is my biggest inspiration in life'
But Mark’s most recent MRI scan showed that his tumour measured at 1.4cm, which means that the radiotherapy and chemotherapy has not been working well.
Steph said: “It took a while to sink in because it happened so fast.
“He has finished his third cycle of chemotherapy although he is not getting the results we want.
“He is going for his fourth cycle of chemotherapy, but it’s not helping.
“We are hoping that it will slow it down and stop it from growing anymore.
“Mark is my biggest inspiration in life with the way he’s fighting it.
'Mark is not losing hope'
“He’s down with it, but he just keeps pushing through with whatever treatment is available.”
Steph says that there are currently no options for treatment in the UK, and the family are desperate to raise £100k (www.gofundme.com/f/7msv8m-lifesaving-treatment) to go private in either Germany or America for clinical trials for immunotherapy.
Steph added: “The money will help with getting Mark the best chance and help us as a family while Mark is out of work due to this debilitating disease.
“You don’t think of these things until someone is affected by this and you do more research.
“Mark is the proudest person I know.
“It took a lot to do the GoFundMe page.
“I look at Mark and I can’t imagine what he must feel like knowing it is growing so fast and there is no hope there, but we are hoping this will help.
“And Mark is not losing hope.
“He’s shown me what strength, courage, and determination really is.
“He’s trying to just keep as much of a normal family life as he can.
'It’s been such a devastating time for Mark and all his family'
“I do believe that his mindset and strength is going to keep us pushing through.”
Steph says that there have been some positive results in the clinical trials for immunotherapy and Car T-Cell therapy outside of the UK.
Steph said: “If successful, it can add years on to his life.
“It’s been such a devastating time for Mark and all his family, and we have to try everything possible to save him.
“I couldn’t imagine seeing my friends having to go through this.”
Steph wants to continue raising awareness over the lack of funding for clinical trials in the UK for glioblastoma.
She added: “We are determined to try and get more funding for research and other options.
“I am more determined to make it about other families because nobody should have to face this, and I hope this helps them.
“If anyone has anyone has any migraines, sickness, dizziness, or any balance problems out of the ordinary they should get checked.”
If you have a story and something you would like to highlight in the community, please email me at jasmine.jackson@newsquest.co.uk or DM me on Twitter @JournoJasmine.
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