The parents of a boy battling leukaemia who can't fly to the US for treatment have revealed he is now taking a harsh trial drug to keep the cancer at bay

The parents of a boy battling leukaemia who can't fly to the US for treatment have revealed he is now taking a harsh trial drug to keep the cancer at bay until the coronavirus lockdown is lifted.  

Denny Nassy-Cornelious has been battling Acute Lymphoblastic Leukaemia, a rare and aggressive cancer which affects the white blood cells, for four years.

The seven-year-old was told he needed a rare therapy that was not available in the UK for his condition and that he would need to raise £500,000 to undergo treatment overseas.

But due to travel restrictions put in place amid the coronavirus pandemic, his parents Dave and Marie-Ann fear Denny may not be able to reach the US in time - despite having raised £430,000 of their half-a-million target.

Denny Nassy-Cornelious (pictured with his parents Dave and Marie-Ann) has been battling Acute Lymphoblastic Leukaemia, a rare and aggressive cancer which affects the white blood cells, for four years

Denny Nassy-Cornelious (pictured with his parents Dave and Marie-Ann) has been battling Acute Lymphoblastic Leukaemia, a rare and aggressive cancer which affects the white blood cells, for four years

Denny, from Hastings in East Sussex, has now been given a harsh trial drug typically used by adults in an attempt to keep the cancer at bay until travel restrictions are lifted. 

He has been treated with the drug - carfilzomib - alongside chemotherapy and has suffered ulcers, extreme weight loss and temperatures as a result of the treatmement. 

The seven-year-old, who was diagnosed with leukaemia when he was three, has recently grown immune to a light form of chemotherapy which lasts up to four weeks at the Royal Marsden Hospital in Sutton, south London.

'This light chemo is very harsh and has taken its toll on Denny - it's ravaging his body,' his father said.

'He's very poorly, has temperatures everyday, he's losing weight and has got mucositis running from his mouth to his bottom. He's very sore.

Pictured: Denny in hospital
Pictured: Denny with his sister Rosie

The seven-year-old (right with his sister Rosie) was told he needed a rare therapy that was not available in the UK for his condition and that he would need to raise £500,000 to undergo treatment overseas

Denny, from Hastings in East Sussex, has now been given a harsh trial drug typically used by adults in an attempt to keep the cancer at bay until travel restrictions are lifted

Denny, from Hastings in East Sussex, has now been given a harsh trial drug typically used by adults in an attempt to keep the cancer at bay until travel restrictions are lifted

'It's been a rough ride. We brought it to people's attention in October but Denny has been going through it for four and a half years.'

Denny has been treated with chemotherapy before, and he went into remission, but he relapsed a year later in October last year. 

His family want to see him undergo CAR-T treatment, which has been trialled at Great Ormond Street and Kings College hospitals but has not been approved across the board.   

Denny's parents had hoped to take him to the Children's Hospital of Philadelphia in the US to take part in a clinical trial of this immune therapy for advanced leukaemia.  

Denny has been treated with chemotherapy before, and he went into remission, but he relapsed a year later in October last year

Denny has been treated with chemotherapy before, and he went into remission, but he relapsed a year later in October last year

Pictured: Denny with his mother Marie-Ann
Pictured: Denny with his sister

Acute Lymphoblastic Leukaemia is so rare it accounts for less than one per cent of all cancers in the UK, with just 790 people diagnosed per year (Pictured left, Denny and Marie-Ann)

Denny's sister Marley, four, has also been diagnosed with the aggressive condition but she is now in remission

Denny's sister Marley, four, has also been diagnosed with the aggressive condition but she is now in remission

'Coronavirus has turned up and really messed up all our plans, because we can't travel because of the virus and the state of his health,' Mr Nassy said.

'The fundraising has come to a halt because we had events lined up which would've brought a lot of money in for the petition.

'If we don't get this treatment, it's palliative care - it's make or break time now. We've exhausted all avenues.

'This is our only option and our last chance to save him. It's not impossible for it to be brought to this country and be used here.'

WHAT IS ACUTE LYMPHOBLASTIC LEUKAEMIA? 

Acute lymphoblastic leukaemia is a rare cancer which affects white blood cells. 

The cancer, which affects both adults and children, progresses quickly and aggressively and requires immediate treatment.     

Acute lymphoblastic leukaemia is incredibly rare, with only  790 people diagnosed each year in the UK. 

Most cases develop in children, teenagers and young adults. 

Most symptoms appear due to a lack of healthy blood cells.

They include: 

  • Feeling tired and breathless
  • High temperatures
  • Night sweats
  • Bone and joint pains
  • Easily bruised skin
  • Swollen lymph nodes
  • Stomach pains due to a swollen liver or spleen  

Other symptoms could also include:

  • Headaches
  • Seizures
  • Blurred vision
  • Dizziness

As acute lymphoblastic leukaemia is an aggressive condition which develops quickly, most treatment takes place shortly after diagnosis.

It typically takes place in the following stages:

  • Remission induction, which aims to kill the leukaemia cells in bone marrow 
  • Consolidation, which aims to kill any remaining leukaemia
  • Maintenance, taking regular chemotherapy medicines to prevent leukaemia from returning    

Source: NHS 

Acute Lymphoblastic Leukaemia is so rare it accounts for less than one per cent of all cancers in the UK, with just 790 people diagnosed per year. 

Denny's sister Marley, four, has also been diagnosed with the aggressive condition  but she is now in remission. 

The Nassy family have raised £430,000 so far for Denny's - with phenomenal contributions from people doing sponsored skydives, bake sales and gigs. 

Mr Nassy has even called on Secretary of State Matt Hancock for help to bring the CAR-T treatment back to the UK for Denny.

'We wanted the treatment to come here because two weeks before Denny relapsed, the treatment was here on trial free of charge,' he said. 'Literally 13 days before Denny relapsed.' 

Sally-Ann Hart, MP for Hastings and Rye, has promised to put forward his case as a priority.

'I just want to give him a shot. There's a chance the CAR-T might not work but I want to give it a shot. He's got a high chance of it working,' he added.

'I don't want to close my eyes and know I didn't try my best. I want to know that we've tried everything.' 

Denny's mother Marie-Ann, 45, is currently self-isolating with Denny at hospital. 

His aunt Michele Laurens said last month: 'It's a desperate situation.

'Denny had a slim chance of survival even if he had the treatment, about 20 per cent.

'But now his chances are close to non-existent because of everything is changing so quickly due to Coronavirus.

'We were hoping to take Denny to America in about four-weeks' time after he had finished his latest course of chemotherapy.

'But what with all the new travel restrictions and the airlines closing down we don't know if we will able to get there, if we will be able to get into the country or if the hospital will still be carrying out the medical trial.'   

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