A High Wycombe couple who lost their son just three months after he got married have shared their heartbreak at his death - as they plead for more funding into brain tumour research.
Jo and Bernard Crossey lost their son Sean just 22 months after he was diagnosed with an aggressive glioblastoma multiforme (GBM) brain tumour.
The senior software developer, who worked Sky's Now TV until he had to retire due to ill health, was diagnosed after suffering from headaches and mild seizures.
He underwent three brain surgeries, chemotherapy and radiotherapy and married his fiancee Laura, but tragically passed away on September 19, 2018 - aged just 29.
Jo and Bernard have now signed a petition demanding action from the government to fund research to help find a cure.
The petition has been created by the charity Brain Tumour Research and calls for increased investment into scientific research to bring parity of funding with other cancers such as breast and leukaemia.
Jo said: “Sean was so kind, thoughtful, generous and funny. When he and Laura married, one of their vows was to make each other laugh every day.
“His mantra was Carpe Diem – seize the day – and that was just what Sean did. He was for ever telling us he loved us and putting his arm round us. Never an hour goes by when I don’t think of him.”
Music was a huge part of Sean and Laura’s lives - Sean was into heavy metal core and had been in a band called This Dying Hour, which recently reformed.
He managed to spend some time at Reading Festival during his last summer.
Jo added: “In August 2018, Sean had a big seizure which we witnessed for the first time – before then he had just had vacant episodes. He underwent a scan and it was heart-breaking to learn that the tumour had taken over Sean’s whole brain and that there was nothing more that could be done.
“My husband Bernard and I signed the petition in honour of Sean. His was such a tragic waste of a life and the heartbreak doesn’t ease.
"If this petition gets the attention of the government and secures future funding into brain tumour research then that’s great.
"It’s too late for our Sean, but hopefully it can reduce the number of families that will be affected by this cruel disease.”
A report circulated to MPs on April 15 highlights the fact that brain tumours kill more children and adults under the age of 40 than any other cancer.
Historically, just one per cent of the national cancer spend has been allocated to this devastating disease.
The charity says that since 2002, when cancer spend records began, £680 million has been invested in breast cancer while just £96 million has been spent on researching brain tumours; a difference of £35 million a year over 17 years.
In its Petition Report, Level Up and Stop the Devastation, the charity is calling on the Government to introduce a new brain tumour research levelling up fund of £105 million, increase the national investment into brain tumour research to £35 million a year and demonstrate joined up thinking for investment across the brain tumour research pipeline.
Sue Farrington Smith MBE, Chief Executive of Brain Tumour Research, who lives in Padbury, near Buckingham, said: “My sister’s little girl Alison Phelan was diagnosed with a brain stem glioma (DIPG) brain tumour in August 2000. Ten months later we lost her, in June 2001, three weeks before her eighth birthday.
“Twenty years on and the fate of adults and children diagnosed with these tumours has not improved - in fact the five-year survival rate has fallen to just 12 per cent.
"What’s more, people diagnosed with low-grade tumours that become aggressive over time live with a ticking time bomb, not knowing if or when their tumour might become a lethal grade 4. In the meantime, they endure sometimes multiple surgeries, chemotherapy and radiation therapy.
"They can suffer changes in personality and more and more disabling impacts, and their loved ones’ lives and livelihoods are changed forever as they become carers.
“These families do not have time on their hands – do we really need to continue the existing rhetoric that has failed them for a generation and wait another 20 years before a cure is found?
"These families need a cure now, they don’t want to be told by their clinician to go and make memories, they deserve to be told what the treatment options are, treatments that will extend their loved ones’ lives by more than mere months.
“Now is the time to give hope to the thousands of families impacted by a brain tumour every year. Along with more than 112,000 people, I am calling on the government to make this the time to level up and stop the devastation.”
Comments: Our rules
We want our comments to be a lively and valuable part of our community - a place where readers can debate and engage with the most important local issues. The ability to comment on our stories is a privilege, not a right, however, and that privilege may be withdrawn if it is abused or misused.
Please report any comments that break our rules.
Read the rules here