An 11-year-old boy has died after a three-year-battle against an incredibly rare form of blood cancer.
The heartbroken parents of Oliver Brown have paid tribute to the 'brave' and 'loving' youngster.
After being diagnosed with Myelodsplastic Syndrome Oliver Brown had intense treatment, more than 15 operations, time in isolation and two 5.5 month stints in hospital, reports Plymouth Live.
Little Oliver, of Plymouth, died at a children's hospice on Saturday evening surrounded by his family including parents Mike and Nicola.
Nicola said: "He was adored by anyone who ever met him, he was unique. They broke the mould when they gave us Oliver.
"He was loving, cheeky, compassionate, brave, and was really contented with who he was as an individual. He had a real zest for life."
Oliver was diagnosed with the blood disorder which is so rare, it affects only four in one million children worldwide, at the end of 2016.
In May, the family were told there was nothing more doctors could do, and that he would only have weeks to live.
But true to his personality, Oliver amazingly defied the odds and continued battling, and living life to the fullest he could for another five months.
Mike said: “He was born with a natural ability to make people warm to him.
"People smiled when they saw him and when they left him they wouldn’t forget him.
"The things that set him above anyone else was his sense of humour and his compassion – his ability to deal with stuff. He could go back to a place and people would remember him. He had a very memorable personality."
After the initial diagnosis, the family were told Oliver needed a stem cell transplant.
His eight-year-old brother Benjamin was not a match so a donor was found and the procedure went ahead in January 2017 following intense chemotherapy.
He was then in isolation for seven weeks in Bristol with only four named people allowed into his room – that didn’t include Benjamin as he was too young.
Nicola stayed with him all week, then Mike and Benjamin did the 2.5 hour journey every Friday from Plymouth.
The brothers would talk through the window via walkie talkies, and Mike would then stay with Oliver whilst Nicola spent the weekend in Bristol with Benjamin, staying in CLIC Sargent accommodation called Sam’s House.
After 5 and a half months of treatment, Oliver and Nicola returned to Plymouth in May 2017.
He was taught at home until the October half term after which he went back to his beloved friends at school.
They had kept in touch whilst he was away by Skyping his hospital room.
Just before Easter 2018, Nicola and Mike noticed Oliver was becoming tired more easily again.
After further tests the family were given the news they’d been dreading. The Myelodysplasia was back.
A second transplant was arranged, this time using stem cells taken from a donated umbilical cord.
But the cancer advanced faster than before and another bone marrow biopsy brought the horrendous news that Oliver had borderline acute myeloid leukaemia.
It was unknown whether a second transplant was advisable and the family decided Oliver would have even more chemotherapy.
The second transplant eventually went ahead in August 2018.
He was hospitalised for a further few months an didn't Plymouth until November.
He had his feeding tube and Hickman line used to give him medication removed in April 2019, but developed shingles within a month and was back in hospital.
Just 10 days later on May 23, 2019, the family were told the devastating news – the second transplant hadn’t worked, the Myelodysplasia was back, and there was nothing more doctors could do.
Nicola said: “He has undergone so much, far more than any adult would expect to go through in their entire life.
"He was born deaf and his whole life has revolved around hospitals. We cannot sing the praises of the NHS enough. Everyone who has been involved in Oliver’s treatment, particularly over the last 3 years, has been exceptional.
"The levels of care, compassion and support for not just Oliver, but us as a family, has made this so much easier to live through.”
Since May, Oliver had more chemotherapy to slow the development of the blast cells within his blood, and lots of blood and platelet transfusions, but the cancer spread.
So the family decided to have as much fun as possible with Oliver whilst he was well enough – to give him amazing experiences, and to provide Benjamin with memories of his brother that would last a lifetime.
Charities and generous local people who heard about Oliver rallied round, and the family spent the last few months making the most of their time together.
Experiences included a treehouse at Center Parcs, visits to Legoland, Longleat, Harry Potter Studios, deer spotting at Bovey Castle, and a trip on a luxury Princess Yachts vesse
The family spent the day with Devon and Cornwall Police, because Oliver had always wanted to be a policeman.
The the family had already put up Christmas decorations because they knew Oliver wouldn’t be here to experience it in December.
They have lights across the front of their house, illuminated snowmen in the garden, a Christmas tree up, decorations including a life-size singing Santa, and a Lego Winter Village complete with moving train.
Mike said: "Oliver had a real love of Christmas, hence why we did it. He genuinely adored Christmas and we knew that he wouldn’t be here this year to experience it. And really, what the hell does it matter how early it all goes up.
Oliver’s funeral will be private but the family are planning to arrange a Celebration of Life service at a later date for everyone to attend.
Nicola said: "Whatever Oliver has faced in life he has done with a smile on his face and love in his heart.
"There has been more laughter than tears in the last three years and we want to remember Oliver like that."
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