Brave Amelia may be allowed home

Amelia Rose Beilby
Amelia Rose Beilby

A WIGAN tot with a terminal illness could be allowed home for occasional visits after spending three years in hospital.

Amelia Rose Beilby, who has a rare degenerative neurological disorder - pontocerebellar hypoplasia type 1B - has only ever known Alder Hey Children’s Hospital as her surroundings but has gone from strength to strength since being told she might not survive an infection last year.

In August she moved from the high dependency unit to the transitional care unit and now there are talks for her to make short visits to her temporary accommodation located a few miles away from the hospital.

She has already had a taste of freedom as she has a portable ventilator and chair, with parents Shelley Beilby and Robert Dainton able to take her out of her room on occasions,

She has also been allowed to the parents accommodation, where her mum and dad are staying.

Her mum, Shelley, of Ince, said: “Amelia has had her first big discharge meeting and we are aiming for home leave for the night mid November without any carers.

“After this, visits will be staged from then on, with a complete discharge at home aiming for April 4.

“We will be training carers in between this period, as she’s been approved for a package but we don’t know which company will pick it up yet.

“I‘m excited and terrified and I can’t decide if it’s 99 per cent excited and one per cent terrified or actually the other way around.”

Despite the progress made on her care, Amelia still suffers seizures and is retaining a lot of fluid on her chest.

Shelley said: “We had a trip to the parents accommodation just the two of us which was amazing but she’s having more seizures than usual.

“She is retaining a lot of fluid on her chest and face.

“She’s gained over 2lbs in four days and we think it’s fluid she’s not eliminating. She has also had some episodes of difficulty breathing and they said excess fluid on her chest could be causing it.”

Amelia’s symptoms include lissencephaly, (smooth brain) of her frontal lobes, which causes problems with the airways, and patchy white matter throughout her brain.

To follow Amelia Rose’s progress, visit www.facebook.com/AmeliaRoseTheStorySoFar. Her family is fund-raising to pay for sensory equipment. To make a donation e-mail ameliarosestory@live.co.uk