Sport Boy battling leukaemia died two weeks before twin's stem cell donation

13:20  04 may  2021
13:20  04 may  2021 Source:   dailymail.co.uk

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A young boy who lost his fight with leukaemia was just a fortnight away from receiving a potentially life-saving transplant from his twin brother, an inquest has heard.

Reuben Whittle, from Croston, Lancashire, was diagnosed with a rare form of acute leukaemia in 2015 - and had already endured a bone marrow transplant before he was due to receive stem cells from his identical twin, Rocco.

But as Reuben's family waited on CAR T-cell therapy test results - a type of immunotherapy he was due to undergo - his condition deteriorated and he developed a severe fungal infection in his chest, a Manchester inquest was told.

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An avid football fan, Reuben passed away from natural causes at Royal Manchester Children's Hospital in October 2019, and was subsequently laid to rest in his beloved Liverpool FC shirt.

Reuben's family have since set up the Red4Reu campaign to help leukaemia research and have raised more than £10,000 for the hospital's charity.

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Reuben, who idolised Liverpool's Brazillian goalkeeper Alisson, was diganosed with acute lymphocytic leukaemia when he was just three and developed the rare Philadelphia chromosome.

Reuben braved two years of chemotherapy before his cancer went into remission, but he relapsed and underwent a bone marrow transplant in March 2018.

The following year, the leukeamia returned and his family offered to donate Rocco's stem cells to increase the level of white blood cells in Reuben's body.

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Tragic details of Reuben's life emerged at an inquest held this month into his death on October 22, 2019.

His mother Jayne Whittle said: 'Reuben had a successful bone marrow transplant and things were on the up.

'However, it was always in the back of our mind whether the leukaemia would return again and unfortunately it did.

'As a family we were shocked and devastated but pulled together and thought we can beat this again.

'Chemo not only pushes down the disease, it also pushes down the lymphocytes so very very bravely - and it would have been the first of its kind - Rocco did donate his lymphocytes to Reuben.

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'As we waited for Reuben to be fit enough for the CART transplant, Reuben's twin brother, Rocco, donated his stem cells for transplant.

'But the tragedy of it all was that those cells had to go off to America for tests and sadly Reuben was about two weeks away from getting those cells put in when he died.

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'It is really tragic and it has left Rocco, obviously, with a lot of questions.

'He wondered if the aeroplane was late bringing the cells back and it's been very difficult for him to come to terms with everything that's happened.

'As a family we are devastated and there will always be a piece missing forever from our family unit.

'Reuben was and always will be our little hero as we can honestly say we have never seen anyone else possess the courage, bravery and positivity that he had.'

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Experts also weighed in on what was done during Reuben's final days in hospital at the Manchester hearing.

Recording a conclusion of death by natural causes, Manchester coroner Zak Golombeck said Reuben died as a result of multiple organ failure following his fungal infection after the bone marrow transplant.

Dr Denise Bonney, a paediatric haematologist at RMCH said: 'Reuben was absolutely great during his chemotherapy treatment.

'He responded really well and we all hoped that would be the only treatment he would need.

'The problem with it is that the more difficult it was to treat, the more likely it was for him to relapse.

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'Many children are cured with chemotherapy unfortunately, that was not the case with Reuben and the disease came back in December 2018.

'We managed to control that disease again and managed to get a bone marrow transplant. He responded incredibly well. We were absolutely devastated when the disease came back in August 2019.'

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Mrs Whittle shared details of 'kind and caring' Reuben's life, and revealed the level of passion he held for his beloved Liverpool FC.

'Reuben was a super little boy, he was kind and caring', she said.

'He always thought of others. He was so loved by his family and friends. He was just loved by everybody.

'It was "Liverpool, Liverpool, Liverpool". He loved playing and watching football.

'His favourite player was Alisson Becker. He wanted to be him and he would tell you who all the Premiership keepers were, and he knew them all.

'In fact, we dressed him in his Alisson Becker shirt and his Liverpool dressing gown when he died.

'He loved his family, loved being with his friends. He was just a cracking little boy, inside and out.

'He loved school. He loved learning. Everything he did, he was just engaged with.

'At the funeral there were so many people there, they had to stand outside the church as they wouldn't all fit in. He was an amazing little boy.'

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Speaking at the inquest, Dr Rachel Barber a paediatric consultant at the RMCH, said: 'Reuben came in with an infection in October 2019.

'He had a bone marrow transplant and lymphoblastic leukaemia, which may have complicated his ability to fight off infection.

'Reuben deteriorated over his first week of treatment and by October 17, a CT scan showed a significant progression of a fungal infection in his chest and it was causing him a lot of distress.

'We had a conversation with Reuben parents about what needed to be done the next day or two. We talked about intubation and putting him on a ventilator.

'Because he was coughing up blood, when we put these children on a ventilator, it can cause a massive pulmonary bleed.

'I do not think anything we could have done would have made a difference to Reuben.'

Dr Golombeck said: 'Reuben was described as a super little boy. He was kind, caring and loved by friends and family.

'He enjoyed school. He persisted with his education through his treatment and was someone who loved learning.

'Dr Bonney told me that the transplant was "like a walk in the park" for Reuben, which I think just goes to show the very nature of this brilliant little boy, who had undergone so much and did not allow this disease to affect his life or at least not to have a significant effect on his loves, which were clearly his family, friends, and his football.

'He was a lover of Liverpool football club and I was told his favourite player was Alisson, the goalkeeper.

'I found a little quote about how the goalkeeper in a soccer team is described as the "jewel in the crown of any team".

'From everything I have heard about Reuben, he was certainly the jewel in the crown.'

Friends and family have been quick to help with the Red4Reu campaign - with his cousin, Martha, 9, making tiny knitted bobblehats for keyrings, while another of his friends' is braving the shave to fundraise.

For information on how to donate to Red4Reu, search 'Reuben Whittle' on justgiving.com.

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