05/10/2013 06:30 BST | Updated 05/12/2013 05:12 GMT

Maisie Harris, 3, Goes Home For The First Time After Spending Whole Life In Great Ormond Street

Maisie Harris is a smiley nearly three-year-old, who adores Minnie Mouse and playing Alphablocks on her dad's iPhone

And for the first time in her life, on Monday night, the toddler will sleep in her own bedroom at the family home, not in her hospital bed.

This weekend, Maisie is preparing to go home, having spent her whole life at Great Ormond Street Hospital, isolated from playing with other children, with her parents often in limbo in hospital accommodation.

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Maisie Harris, who is set to go home for the first time in her life on Monday

Maisie suffers from Ondine's Curse which means her brain forgets to tell her to breathe. The toddler requires 24-hour ventilator treatment for the rare condition, which is medically known as congenital central hypoventilation syndrome (CCHS).

Her brain fails to send the correct messages telling her to breathe but Maisie also suffers from malacia of the airways - "floppy" airways that do not hold their shape properly.

Her mother Rachel Bridger, 23, who also suffers from a milder form of the condition, said: "We cannot wait to bring Maisie home and enjoy being a normal family. It's felt as though we have been in hospital for a lifetime.

"Everyone here has become like a second family to us - they know Maisie inside out.

"She knows her own mind but she is a really happy little girl. She's hardly ever upset. I don't think it will take her long to get used to playing with her toys at home and sleeping in her own bed for the first time.

"Our friends and family have helped us decorate the house and get it ready for her. We've painted her bedroom cream and we have got some lovely stick-on stencils for the walls."

Thanks to a smaller, more portable ventilator, Maisie will be able to leave hospital and head home to Gillingham in Kent.

The new ventilator is intelligent enough to know when she is able to take her own breaths and when she is likely to have a CCHS episode and require ventilation.

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Maisie with her parents Rachel Bridger, 23, and Andrew Harris, 26.

It also comes with batteries and a carrying case so Maisie, who turns three on October 23, can go on outings with her family and, it is hoped, start school in the future.

Great Ormond Street Hospital (GOSH) staff held a going-home party on Miffy Ward yesterday to celebrate the little girl's bravery.

The couple have mostly been living in hospital accommodation ever since Maisie was transferred to GOSH from Medway Maritime Hospital when she was three months old.

They have taken it in turns to make the hour-and-a-half journey back to their home.

Her parents now hope she will be able to mix with other youngsters at nursery.

Mr Harris said: "She will have to get used to lots of new faces as she only really sees close family and her nurses.

"Hopefully she will soon learn to share her toys and play with other children."

Dr Colin Wallis, a consultant in respiratory paediatrics at GOSH, is working with a number of children requiring long-term ventilation, including Maisie, to allow them to spend more time at home with their families.

He also treated Ms Bridger when she was younger.

He said: "Maisie's situation is quite complex because she has a combination of different respiratory conditions, but we are hopeful this new technology will allow her to go home, be with her family and start enjoying a fuller, more normal life.

"We have been working on ways to allow a greater number of long-term ventilated children to go home - not only because it greatly enhances their quality of life, but also because it's much better for their development.

"The family home is the best place for a young child to grow and develop, and Maisie will now be able to go out and about with her family, make new friends and experience everything the outside world has to offer."

Dr Wallis said CCHS can run in families but added: "It is incredibly unusual to see two generations affected by it like this.

"Maisie's condition is more severe than her mother's and is also complicated by the additional problem of malacia of the airways."