Syndrome de Dravet: à la maison pour Noël après une année à l'hôpital

Syndrome de Dravet: à la maison pour Noël après une année à l'hôpital

janvier 7, 2020 0 Par admin

Translating…

Elsie
Image caption Elsie has a number of epileptic fits each day

A three-year-old girl with a rare form of epilepsy will be home for the first time in a year on Christmas Day.

Elsie has Dravet syndrome, which can cause seizures thought to be linked to developmental delays and learning difficulties.

She has been on the children’s ward at Ysbyty Gwynedd, Bangor since having a seizure on Christmas Eve last year.

Doctors hope her temporary release on Christmas Day will be a first step to eventually returning home full-time.

« We need the house to have space for two carers to come live with us, more or less 24-hours, » said her mother Gwennan Owen, who has five other children.

The family has had to move to a new house near Caernarfon which is better adapted.

Only about two or three people out of every 500 with epilepsy have Dravet syndrome and life expectancy for those diagnosed is short.

Elsie has a number of seizures every day and she is currently being treated with cannabis oil to improve her quality of life.

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Media captionElsie has a rare form of epilepsy which can cause seizures thought to be linked to developmental delays

Jo Douglas, the hospital’s clinical services manager for paediatrics and neonatal services, said staff were pleased Elsie would have Christmas with her family.

« We’re very happy – it feels like, eventually, a light at the end of the tunnel for Elsie, » she said.

« We can see her developing, we see her growing in confidence, she attends school from here.

« It’s just a fantastic transition to take her home and we can’t wait for that to happen. »

Ms Owen calls the staff at the ward her « rock » and said that Elsie « wouldn’t be where she is now » without them.

But coming to see Elsie daily and caring for the rest of the family is a difficult balance.

‘Magical for her’

« I’ve had to give up working, but [partner] Dave obviously is still working, » she added.

« It’s just… we had no choice and you’ve just got to carry on.

« A lot of sweat and chocolate, and you keep going. »

Having Elsie at home for Christmas will be the return of « normality » for the family.

« It will be magical for her, » her mother said.


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