A WIGAN tot with a rare degenerative neuroligical disorder is defying the odds by preparing to leave her hospital bed for the first time.
Amelia Rose Beilby, who has pontocerebellar hypoplasia type 1B, was not expected to make her first birthday but now, at three years old, she is making good progress and has been given a portable ventilator and chair.
It’s a huge decision and a risk but she deserves to get out and see the world, we’re excited and also scared to risk the stability she has at the moment. She’s a warrior princess and I have every faith in her, we’ve fought for so long for her to have a chance and it’s finally happeningShelley Beilby
It means parents Shelley Beilby and Robert Dainton, of Ince, can now take her out of her room at Alder Hey Hospital on occasions and visit the gardens,
Shelley, 30, said: “Amelia was on palliative care for a long time and we were told not to take her to the intensive care unit if she was to deteriorate, but she survived all winter without getting an infection.
“Doctors were surprised at how well she coped. She is watching TV and interacting with people. Now doctors have agreed for her to go on long term ventilation, rather than palliative care. She is using a portable ventilator, weaning her on dry air, rather than warm, dehumidified air.
“This means that once she has got used to it, we can make short trips away from her room - to the canteen or even outside, as she has not been outside for 18 months. We can have more quality time with her, without nurses, which is great,
“It’s a huge decision and a risk but she deserves to get out and see the world, we’re excited and also scared to risk the stability she has at the moment. She’s a warrior princess and I have every faith in her, we’ve fought for so long for her to have a chance and it’s finally happening.
“If she stays stable, we could plan to take her home. We would love to get her out of hospital permanently.”
Amelia has also got a new chair, provided by New Life Foundation, which enables her to sit more comfortably unaided.
Shelley said: “She needs a chair to support her as she does not have muscle tone and she needs to sit in a good position so she does not damage her spine. There is a plate underneath which carries her suction machine, ventilation equipment and oxygen. It is a combined pushchair and wheelchair. It is fantastic. We previously had a chair form New Life Foundation, but it was a smaller size and so she has outgrown that.
“She loves it as it is so comfortable. It is important for her to be comfortable to show she can be transported and use the portable ventilator. Without it, there would be no point in getting the portable equipment if she can’t sit in the chair.
“Having the right chair to support her for long periods of time is a massive thing. We are really made up as she has been given a chance to improve the quality of her life - something that we thought would never happen. Last year we were having meetings with doctors with them advising we should let her go if she got a serious infection, but she turned herself around and is doing so well.”
Amelia, more affectionately known as Mimi, was delivered by emergency caesarian, and despite a relatively normal pregnancy, she was born with a catalogue of problems. Her 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 email@example.com