Amali’s story

Est. read time – 8-9 minutes.

Jane Rose-Brown has a treasured tattoo on her arm bearing the sentence ‘I will always be with you’.

They were the precious words of her “bright, kind, gentle and intuitive” little boy, Amali, who received end-of-life care at The Nook and died in September 2020. He was just four.

Amali, whose name means ‘hope’ in Swahili, had a severe neurological disorder called Leigh syndrome. It affected muscles throughout his body, impacting everything from his walking to ability to swallow.

The condition was only diagnosed four months before he died and Jane and partner Jake were eventually referred to EACH.

They reflect with gratitude for the “kind, compassionate and invaluable” care and support they received – both at the time and subsequently, through counselling.

Naturally, they also love nothing more than talking about their boy.

“People always use the word ‘wise’ when they describe Amali,” said Jane.

“I can see why, because he was mature beyond his years – always talking, listening, learning and questioning. He was intuitive, like an adult.

“He was an amazing child and a very special person – one that would undoubtedly have gone on to do great things.

“He loved connecting with the world, had a thirst for knowledge and was such a bright boy, who loved travelling and exploring new places.

“He enjoyed visiting Tanzania, where Jake and I met, and another holiday in Denmark and Sweden. He could even speak some Swahili.”

Jake describes Amali as “kind and gentle”.

“He loved nature, being outdoors and helping me in the garden,” said the teacher at Norwich’s Avenue Junior School.

“He also loved art, drawing and painting, as well as books, and he was starting to read.

“He’d just completed his first fortnight at primary school. It was always his dream to reach that stage and become a schoolboy.”

Having previously been misdiagnosed, the couple were eventually told Amali had Leigh syndrome, in May 2020.

Then, four months later, after catching a cold that impacted his lungs, he deteriorated quickly and Jane and Jake, who also have a 16-year-old son, Mpaji, were referred to EACH.

They moved into The Nook on a Sunday and Amali died on the Tuesday.

“We’d initially wanted him to come home,” said Jake.

“We thought a children’s hospice would be too much like a hospital – full of noise and machines. In reality, it was more like a hotel.

“It sounds crazy but, if it’s possible, Amali had a ‘good’ death. He wasn’t in pain, scared or in a hospital bed.

“Instead, he was around the people he loved, in a safe, supportive, comfortable environment.

“We had the chance to say a proper goodbye and that’s a blessing many others don’t have.

“The staff were spectacular, both with us and our wider family.

“They were also incredibly kind to Billy, our eight-month-old baby. They looked after him constantly – playing with him, feeding him and bathing him.

“They brought him to see us but because we knew he was happy and safe, we were able to concentrate solely on Amali.

“He had our undivided attention and, as a family, we couldn’t have been better looked after, from start to finish.

“I remember one day being asked what I’d like for breakfast. I said I fancied a bacon roll and one duly appeared. It was only later I discovered someone had gone out especially to buy the bacon!

“These things seem small and insignificant but make the biggest difference. They’re little acts of kindness that mean so much.”

Jane, also from a teaching background, has similar memories, in terms of the quality of the support they received.

“I appreciated the openness and honesty of the care staff at The Nook,” she said.

“They didn’t shy away from the reality of our situation and I respected that.

“It was so different from the noise and chaos of the hospital.

“Aside from the care, there was also practical support, which helped us function.

“People did our washing and, even when we left the hospice for the last time, we were given a home-cooked lasagne for dinner.

“They didn’t need to do that and I’ll forever be in awe of such kind, compassionate people.

“The night before Amali died, we put him in his pushchair and took him for a walk around the hospice grounds, collecting acorns in a little bag, just as he always used to.

“He was very poorly and slept the whole time, but we wanted to take him outside one last time.

“The nurse who was there at the end was so calm, caring and sweet.

“She kept popping her head round the door to check we were awake, because she knew the end was near.

“That happened throughout the night and Amali died in our arms at 6am.

“It was the worst moment of our lives but the nurses did things I’ll always appreciate and remember.

“They changed Amali into his new bunny pyjamas and I loved the fact they kept talking to him, even after he’d died. I thought that was beautiful.

“EACH also helped with funeral arrangements and provided practical help in terms things we needed to do – things we weren’t in a position to consider ourselves.

“One of our biggest regrets is that Billy doesn’t have any memories of Amali. He was only eight months old when he died.

“However, Amali was certainly very proud to be a big brother and adored Billy.

“They loved playing in a ball pit, in the paddling pool and with building blocks. Amali had his own camera and liked taking photos of Billy.”

EACH’s support for the couple continued after Amali’s death.

The couple had counselling sessions, together and individually, and attended bereavement support groups.

“Our counselling was invaluable, helpful and reassuring, starting at a time when I could barely string a sentence together,” said Jane.

“(Counsellor) Amy (Brown) was brilliant. She just listened, let me rant and never tried to quieten me down.

“She didn’t argue with me, dismiss me or say pointless things like ‘time’s a great healer’, which simply isn’t true.”

Jake added: “We went to parent support groups where we met people with similar thoughts and feelings.

“Amy helped us navigate our grief, which we experienced very differently.

“She helped us understand the way the other was feeling – to support and be kind to each other.”

Jane and Jake, who live a stone’s throw from EACH’s shop in Aylsham Road, Norwich, wear matching necklaces featuring an imprint of Amali’s thumb. They were made by members of the care team at The Nook.

In addition to her ‘I will always be with you’ tattoo, Jane also has a print of Amali’s hand on her arm, as well as his handwritten name and a line from a poem read at his funeral.

“He never gave up on anything,” said Jane.

“He always wanted to walk, for instance, even when the muscles in his legs weren’t strong enough.

“He took part in a friend’s sponsored walk, going round and round our garden, which was an amazing and very determined thing to do.”

Jane recently supported EACH with its myth-busting ‘I wish you knew…’ awareness campaign and the couple have shared their story with nurses at the Norfolk and Norwich Hospital, as part of professional training days.

“It’s our way of giving something back, because they were there when we needed them,” said Jake, who organised a fundraising challenge in May 2021, rallying friends and raising just over £40,000, which was split between EACH and The Lily Foundation.

“We were desperately unlucky, because of what happened to our son.

“However, we were fortunate and blessed in terms of the way it happened. Things were as smooth as they could possibly be, thanks to EACH.”

Jane agrees.

“The support meant Jake and I could spend Amali’s last few days in bed with him, with him eating raspberries, watching telly and us reminding him of all the great things we’d done together,” she said.

“His grandparents and close family were also able to be there at the hospice.

“He died peacefully, without being scared, with both of us by his side, and it would have been so much worse without EACH.”

Published in June 2024

Families’ stories and experiences are unique to them and we have been kindly granted permission to share this family’s story. If you have been affected by what you’ve read or have a question and would like to talk to someone, please contact your local children’s hospice service or Together for Short Lives, the UK charity that supports families caring for seriously ill children (tel: 0808 8088 100).

Would you like us to write and share your own family story?

We give all those receiving support from EACH the opportunity to share their family story. All family members are welcome to get involved if they’d like to and we will never share your story until you are completely happy with it. If you have any questions or are interested in finding out more, please contact Matt Plummer, EACH Media and PR Manager at matt.plummer@each.org.uk.

He was an amazing child and a very special person - one that would undoubtedly have gone on to do great things.

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