Young friends of a Loanhead girl, now housebound from a rare neurological condition, have rallied to support the family in their hour of need.
Ten-year-old Leila Paris was diagnosed last year with Generalised Dystonia, where signals from her brain cause her body to suffer severe spasms.
Within six months Leila was using a wheelchair. She now finds that too uncomfortable.
The Loanhead Primary School pupil has been undergoing tests at the Evalina Children’s Hospital and King’s College in London with a view to undergoing an eight-hour operation which it is hoped will give her a new lease of life.
It is expected the operation will be performed before the end of the year.
Leila will be in hospital in London for 10 days after which it is hoped she will show a 60-90 per cent improvement and not have to rely so much on daily medication.
While the NHS will meet the travel costs, Loanhead After School Club has raised £1000 to meet the Paris family’s living costs while in London for the operation,
Loanhead After School Club raised the money at a special fun day which included a sponsored walk and teddy bears’ picnic.
Mum Lisa said: “I want to say a huge thanks to the community and the after school club for making this happen. We are truly blown away.
“Leila started crying when I first told her about it.”
Of the operation, Lisa explained: “She can’t sit so she’s pretty much housebound at the moment. She is waiting for an operation in London for Deep Brain Stimulation.”
Dad Iain continued: “The surgeon will have CT scans so he can see what area of the brain has been affected. He will insert two very fine probes in through the skull.
“Once they are in the right area it is simply a case of attaching the electrodes to a wire feed under the skin, down her neck and down the side of her ribs.”
The wiring will be connected to a tiny pacemaker by her ribs, which will send signals to the probes.
The cause of the dystonia is unknown and is rare to be the primary condition and not brought about by an earlier trauma. It usually manefests itself in children Leila’s age. Dystonia has genetic links to Parkinson’s.
Iain added: “It just came out of the blue. Two days before she had been at the climbing wall at Ratho. She was always playing or on her bike or swimming.”
He continued: “She has been pretty resilient. This morning the occupational therapist was in and Leila was laughing and joking and telling her stories. She still manages to smile.
“It has been challenging for her especially getting in the wheelchair to go to school. It has been a huge step, a huge step for her.”
Around 8000 children in the UK have dystonia.