The heartbroken parents of 11-year-old Oliver Brown have described their son as loving, cheeky, braveand unique, less than a day after he lost his battle with a rare form of blood cancer.
Mike and Nicola Brown from Plymstock said Oliver passed away at Little Harbour childrens hospice in St Austell on Saturday evening surrounded by his family, including eight-year-old brother Benjamin.
Oliver has spent the last three years being treated for a blood cancer that is so rare, it affects only four in one million children worldwide.
Nicky said: He was adored by anyonewho ever met him,he was unique. They broke the mould when they gave us Oliver. He was loving, cheeky, compassionate, brave, andwas reallycontentedwith who he was as an individual.He had a real zest for life.
Oliver was diagnosed with Myelodsplastic Syndrome at Bristol Childrens Hospital towards the end of 2016, which he had developed as a result of a complicated genetic disorder relating to his GATA2 gene that also led to him being born deaf.
The Goosewell Academy pupil spent the last three years facingintense and invasivetreatment,over 15operations, time in isolation and two 5.5 month stints in Bristol Childrens Hospital.
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 wouldnt 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. 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 didnt 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 Sams House.
After 5.5 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, and after further tests the family were given the news theyd 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 was advancing faster than previously and another bone marrow biopsy brought the horrendous news that Oliver had borderline acute myeloid leukaemia, and it was unknown whether a second transplant was advisable.
It was decided Oliver would have even more chemotherapy and the second transplanteventuallywent ahead in August 2018. He was hospitalised for a further few months, not returning to 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 hadnt 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 Olivers 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, a trip on a luxury Princess Yachts vessel, doing the zip line at the Eden Project, hosting his own radio show, presenting the news during a tour of local BBC studios and completing a young drivers experience.
He was taken for a ride in a helicopter, took part in a mass motorcycle ride, and a Volkswagen cruise, as well as meeting the Devon Air Ambulance team, going out on the RNLI lifeboat, being a fireman for the day, spending time on his Year 6 school residential, and meeting players and the coach at an Exeter Chiefs rugby match.
But best of all, according to Mike, was when the family spent the day with Devon and Cornwall Police, because Oliver had always wanted to be a policeman.
Mike said: The biggest highlight was the day we spent with Devon and Cornwall Police. We knew how much it meant tobothboys. It was the unexpected nature of it. It went from a look around a police car to a remarkable day hosted by genuine people, it was just amazing.
Its been remarkable the amount of people that have offered what they can as a gesture of kindness. Its given Oliver some exciting moments, and given Benjamin memories for life.
And one of Olivers favourite places to return to each time he got out of hospital was Plymouths West Hoe Park - where he became friends with Jan and Shelley who run it and would help them out on the Gus Honeybun train, the bouncy castle or the kiosk.
Mike said: He always wanted to help others, he just loved it. And he loved West Hoe Park. It was his go-to place during the last three years.
He added: Oliver took the last three years in his stride. He absorbed it all and made it easy for everyone else around him. If someone asked him how he was, he would always say he was fine,despite talking with us how tough he was finding it.
Nicola said Oliver was a thrillseeker and some of the experiences the family had since being told he didnt have long to live have been incredible.
She said: He was such a thrill seeker. He was the one that got me on the high ropes at Center Parcs and the zip wire at Eden. I would never have done any of it. But the fact I did it with him wasa really special moment.
He had a real zest for life. We have done things because of him that we would never have had the opportunity to do. He was always up for trying new things and was the first to volunteer for something.
Nicola said Oliver also had a real sense of fairness and equality - choosing to support one side during the first half of a rugby match, then the other team during the second half, to keep things fair.
She said: His sense of fairness and equality played a big part in everyday life. He would always make sure games were played by the rules. He was a stickler for the rulebook. He would always want to be the referee in any games as he was somewhat clumsy when it came to sport!
Oliver was interested in current affairs and would watch BBC Breakfast News every day - once writing a list of things he wanted to see happen in the world including Donald Trump banning guns, more NHS beds and litter patrols on beaches.
He was voted to be an eco warrior at school, meaning he had to attend meetings and put forward ideas on how the school could improve and be more environmentally friendly.
Nicola said: He was very much like his Dad - very happy to have a laugh and a joke but cared deeply about things that matter and things that affect other people. From a really young age he was really empathetic.
He was very true to himself, he didnt follow trends, he was never influenced by anybody else. He was unique and very contented.
He had a real willingness to smile and engage with people, and that set him apart from anyone else. Even going back to that dustbin story when he was just three.
The Herald reported back in 2010 how the men who operated the bin lorries in his street gave him a Christmas present, after he would go out and see them do their rounds every single week.
Nicola added: He pushed the boundaries in a comedic, jokey, cheeky way as a young child, whichwas one of the main reasons that he was able to work his way into the hearts of everyone he met.
Last week Plymouth Live reported how the family had already put up their Christmas decorations because they knew Oliver wouldnt 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 wouldnt be here this year to experienceit. And really, what the hell does it matter how early it all goes up.
One of Benjamins wishes was that Oliver was here for Christmas and that if he couldnt be, he wanted him here to put up the decorations. We wanted to make that happen so he could experience Christmas one last time together.
In September Mike and five of his friends took part in the One Pedal At A Time cycle challenge from Lands End to Bristol to raise money for the Wallace and Gromit Grand Appeal which supports Bristol Childrens Hospital. They raised a staggering 16,500.
Olivers 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.
To make a donation to Little Harbour childrens hospice in St Austell visit this fundraising page.
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Family's tribute to 'brave and loving' Oliver Brown who has died aged 11 - Devon Live
