A Sidbury family has paid tribute to its ‘superhero’ daughter and sister whose smile and strength drew people in wherever she went.
Amelia Roberts, 11, has been remembered as a determined individual who embraced life, despite battling a rare, life-limiting illness.
At the age of five, she was diagnosed with Batten’s Disease, which left her requiring round-the-clock care as she was unable to speak, move or swallow.
The 11-year-old died peacefully at the Royal Devon and Exeter Hospital last Tuesday surrounded by family.
Her mother, Bev, said: “She was absolutely amazing. There was never a dull moment with Amelia. Everything was on her terms from the second she was born to the second she took her last breath. It was her story.
“She kept fighting until she couldn’t fight anymore. I blessed her on her way and told her she didn’t have to fight anymore. Half-an-hour after that chat, she died in my arms. That is exactly the way she wanted it.
“She was amazing. She was my superhero.”
The mother-of-three described the last six months as a ‘rollercoaster’ for the family, as Amelia fought infection after infection to reach her 11th birthday in March.
The Furzehill resident said: “It [Batten’s Disease] is very cruel; it doesn’t care. It robbed her of her childhood.
“You had to look past the wheelchair; that’s one thing I taught people, and certainly Amelia taught people to look beyond the diagnosis and look past the chair.
“She embraced life and took on whatever was thrown at her. She fought every step of the way.”
Bev said that Amelia enjoyed nature and loved bugs - and getting muddy - as well as listening to her brother, Dylan, playing the guitar.
She said her children, Alishia, 15, and Dylan, 13, had helped her to make every second count for their sister after Amelia’s ‘ticking time bomb’ diagnosis.
“It was life changing for them, but they never complained. They just adapted. It’s made them fantastic, grown-up little people. They are non-judgemental. They are kind, loving, accepting,” said Bev.
“I didn’t think about the prognosis. We just went on living, taking each day. If I hadn’t, then I wouldn’t have been any good to anyone, not Amelia or her siblings or to myself. We took her ice-skating and we went to London. She made me overcome so much.”
Amelia’s family worked with Children’s Hospice South West (CHSW) and spent respite days at its Little Bridge House in Barnstaple.
Kay Holloway, a member of the care team at CHSW, has worked with the family since it started going to the centre five years ago.
She said: “I think Amelia was a real tribute to her mum, who has done a brilliant job with all of her children. Amelia just drew people in. She was very brave and she did what she wanted to do.”
Nicholas Ware, Amelia’s teacher at the WESC Foundation, a specialist day and residential centre for young people and adults with visual impairment including complex needs in Exeter, called the 11-year-old an ‘animated young lady’ who made the most of everything.
He added: “During her last weeks at WESC Foundation, she was still showing interest in sensory stories and other experiences offered. It was obvious, too, that, although unable to speak, she was still trying to communicate. She has left a strong and enduring impression on all who knew her.”
Following Amelia’s death, staff at the Royal Devon and Exeter Hospital School organised for Alishia and Dylan to attend a guitar class led by pop star Jake Bugg.
Bev said: “That was just phenomenal memory in their darkest days.”
The family and those who worked with Amelia attended a service of celebration in her memory at Barnstaple Crematorium yesterday (Thursday).
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