Family's tribute to 'ray of sunshine' Tom

Nicky Brown paid tribute to her son Tom, who died in January, aged 11. 

Nicky Brown paid tribute to her son Tom, who died in January, aged 11. - Credit: Nicky Brown

The family of an 11-year-old "ray of sunshine" who was first given less than a year to live have praised the care they received in his final days as they look to support others affected by bereavement.

Tom Brown, from Grundisburgh, lived with a range of health issues having been diagnosed with rare brain conditions polymicrogyria and schizencephaly as a baby. 

Tom Brown's family have paid tribute to the 11-year-old who died earlier this year as they raise awareness for EACH.

Tom Brown's family have paid tribute to the 11-year-old who died earlier this year as they raise awareness for EACH. - Credit: Nicky Brown

In the run up to Christmas last year, he and his family were told he had osteosarcoma, with the cancer growing in his right leg. 

The news left the family "in pieces" as doctors looked into treatment for Tom, which would have involved an amputation at the pelvis followed by 10 weeks of intense chemotherapy. 

Mum Nicky, said: "Tom enjoyed his life, despite everything he had to contend with, and I was very proud of him, because they only gave him six months to a year to live in the beginning. 

“However, he just went through life thinking ‘I don’t think so – I’m enjoying this too much’. 

“He’d come a very long way and fought hard to stay with us, only for cancer to come along. 

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“I’m very angry about that because it robbed him and robbed us. He’d been through so much so for that to come along was hugely unfair."

She and husband Tim, 50, said they could not put Tom through the treatment. 

Mrs Brown said: “He wouldn’t live at home and that could mean losing him at hospital away from his family or on an operating table. He didn’t deserve for his life to end that way." 

On Christmas Day, the family, including brothers Ben and Luca moved into The Treehouse run by East Anglia's Children Hospice with Tom.

The family stayed with him until his death on January 16. 

The mum-of-three said: “I knew I’d reached a point where looking after him was beyond my capability. Medically, we were in a place no parent can cope with. 

“So at 8pm on Christmas night, an ambulance rolled up and we went to The Treehouse. 

“It was unbelievable and awful. 

“A nurse and care assistant left their families on Christmas Day to open up the hospice in our time of need. We ended up living there and being looked after for 16 days." 

Tom had lived with chronic lung disease, meaning he was often in hospital with chest infections, and a severe form of epilepsy called Lennox-Gastaut syndrome. 

The 11-year-old's tumour measured seven centimetres in diameter, but despite this, his mum said he was still smiling.

The family had been supported by EACH since Tom was in the special care baby unit at Ipswich Hospital, and he received musical therapy sessions. 

Tom Brown with EACH staff member Ray Travasso who worked with him through music therapy. 

Tom Brown with EACH staff member Ray Travasso who worked with him through music therapy. - Credit: Nicky Brown

Staff also helped to make brother Ben's 18th birthday on January 8 as special as it could be by decorating the hospice and serving food and cake. 

In tribute to her son, Mrs Brown said Tom had a "real zest for life" and was a ray of sunshine. 

She said: “All he wanted to give and receive was love and he had so much to offer. 

“He had many girlfriends, including all the girls who looked after him at EACH. 

“He was just a happy, happy boy. He loved his family and he loved his home. 

“He always had a smile on his face and it didn’t matter what he was going through."  

The hospice has launched its Big Give Christmas Challenge which will see all donations between November 30 and December 7 doubled by the organisation Big Give.

The money raised will go directly to the charity's bereavement services, which continues to support the family. 

Mrs Brown said: “We never thought we’d need to use the hospice.

“In fact, when we had Tom, we didn’t even know there was a children’s hospice in Ipswich.

“Unfortunately, you never know what’s round the corner or when someone you know or love may find themselves in that position."

Tom was one of three brothers, pictured with his youngest sibling Luca.

Tom was one of three brothers, pictured with his youngest sibling Luca. - Credit: Nicky Brown

The family are now facing their first Christmas without Tom, but aim to make it as magical possible for his younger brother Luca, nine. 

Mrs Brown said: “We’ve all accepted that and so we’re going to do it a little differently to other years.

“Having said that, you have to bear in mind that I still have a little boy and I have to make sure it’s magical for Luca.”

To show your support, visit the Big Give website between 30th November and 7th December and make your donation to EACH.

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