A little boy battling leukaemia lost his fight for survival weeks before he was to get potentially life saving stem cells donated by his twin brother.
Reuben Whittle, seven, was about two weeks away from having the stem cells put in when he died, his mum said.
His mother Jayne Whittle said it’s tragically left identical sibling Rocco, who donated his cells, with a lot of questions.
“As a family we are devastated and there will always be a piece missing forever from our family unit,” she said.
Reuben had already undergone a bone marrow transplant but he relapsed and he was two weeks away from receiving lymphocytes given by Rocco.
As the youngster awaited results of tests on CAR T-cell therapy – a type of immunotherapy he was due to undergo – his condition deteriorated and he developed a severe fungal infection in his chest.
He passed away at Royal Manchester Children’s Hospital and was subsequently laid to rest in his beloved Liverpool FC shirt and dressing gown.
Reuben’s family have since set up the Red4Reu campaign to help leukaemia research and have raised £10,674.50 for the hospital’s charity.
The youngster of Croston, Chorley, Lancs, who idolised Liverpool goalkeeper Alisson Becker, was diagnosed with acute lymphocytic leukaemia in 2015 when he was just three and developed the rare Philadelphia chromosome.
He was treated with chemotherapy for two years and the cancer went into remission but he relapsed and underwent a bone marrow transplant in March 2018.
But the following year his illness returned and his family offered to donate Rocco’s stem cells for transplant to increase the level of white blood cells in Reuben’s body.
His mother Jayne Whittle said: ”Reuben had a successful bone marrow transplant and things again 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.
“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 sadly died. It so really tragic and it’s 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.”
Tragic details of Reuben’s life emerged at an inquest held this month into his death on October 22 2019.
Mrs Whittle told the Manchester hearing: ”Reuben was a super little boy. He was kind and caring. He always thought of others. He was so loved by his family and friends. He was just loved by everybody.
“He liked football. It was “Liverpool, Liverpool, Liverpool”. It was all Liverpool FC. He loved his family, loved being with his friends. He was just a cracking little boy, inside and out. He loved watching football, and he loved playing football.
“He loved his family, loved being with his friends. He was just a cracking little boy, inside and out. He loved watching football, and he loved playing football.
“After his bone marrow transplant, we had to stick hoops up in his goal. At the hospital we put an iPad outside and set it up, a bit like David Beckham used to score goals, trying to get them through the hoops, to try and make his scoring more accurate.
“He loved playing football. He loved watching football. He loved school. He loved learning.
“Everything he did, he was just engaged with. 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 Allison Becker shirt and his Liverpool dressing gown when he died.
“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. ”
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. 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.”
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’s 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.”
Recording a conclusion of death by natural causes, Manchester coroner Zak Golombeck said Reuben died as a result of multiple organ failure due to pseudomonas sepsis, an unidentified fungal infection and relapsed acute lymphoblastic leukaemia post bone marrow transplant.
He 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.”
Reuben’s cousin Martha, aged nine has been making tiny knitted bobble hats to go on keyrings and selling them for £5 each in aid the family’s Red4Reu campaign. One of Reuben’s friends is also having all his car cut off to help raise money.