Brave Leonie’s surgery success

By Garth ApThomas

A NATIONAL horse riding champion with a rare neuromuscular disorder is happily recovering at home after receiving her best Christmas present ever – a life changing operation.

Teenager Leonie Saffy underwent surgery that lasted 11 hours to tackle a severe spinal curve which was putting pressure on vital internal organs and drastically reducing her ability to breathe – tests revealed Leonie’s lung function was down to just 26 per cent.

The spinal fusion at Alder Hey Children’s Hospital in Liverpool carried the risk of causing paralysis, as surgeons had to drill into bones which were just millimetres from her spine.

But the courageous 14-year-old is now convalescing, making great progress in her recovery and even looking forward to an action packed 2017.

“We are all absolutely thrilled that Leonie’s operation has been a success,” said her delighted mum Zara, aged 38, of Albert Grove, Ruabon, near Wrexham.

“As a family this is the best present we could have possibly had for Christmas. Now we are looking ahead to a wonderful new year. We would like to thank all the medical staff involved, they are brilliant. ”

Mrs Saffy outlined the painstaking procedure undertaken by the surgical team who carried out the operation a month ago on her brave daughter.

“They positioned 20 titanium screws into Leonie’s vertebrae,” she explained. “The process goes from the neck and works down through the back, a bit like a train track.

“Two titanium rods are inserted, connected to the screws, and all this together forces the spine to straighten. As part of the process three ribs had to be broken and shortened by an inch.

“She now has to rest until February when the next X-ray will be taken.”

Leonie, a pupil at Ysgol Rhiwabon, was born with Multiple Pteryglum Syndrome – Escobar Type. There are only about 50 other known cases around the world.

“Escobar Syndrome causes mass damage to all muscle tissue,” Mrs Saffy said. “It has resulted in Leonie only having 40 per cent muscle throughout her body, affecting all internal organs.

“She has tight muscles, tendons, restrictive lung disease and a congenital heart problem.

“Escobar also causes Arthrogryposis Multiplex Congenita and Scoliosis, which resulted in a double major spinal curvature of 74 degrees.”

In 2011 Leonie started riding lessons to help build up her body’s core strength at the Clwyd Special Riding Centre in Llanfynydd.

She quickly excelled, progressing to become a champion horsewoman winning many national trophies and even going on to ride for Great Britain in para dressage. She hopes to represent her country again in 2017.

“It will be some months before Leonie is able to return to horse riding,” said Mrs Saffy.

Mrs Saffy added she would like to thank everyone who has helped raise funds to support Leonie take part in para dressage.

“People have been so generous and we greatly appreciate all their efforts. If anyone would like to get involved in fundraising they can contact me through e-mail on”


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