A brave 10-year-old girl is using horse riding to battle a rare genetic condition.

Leonie Saffy, from Ruabon, loves riding at Clwyd Special Riding Centre, near Wrexham.

Leonie, who attends St Mary’s School, has a rare condition called Escobar Syndrome which affects the development of her muscles, bones, and ligaments.

One of the benefits of the horse-riding is that a massive operation to insert titanium rods to straighten her spine can be delayed until she is older and stronger.

Leonie’s Mum, Zara Griffiths, explained: “The signal from the brain to the muscles, the ligaments and the tissues get disrupted so the body doesn’t develop properly.

“Where as a regular baby would have a 100 per cent of the ligaments and the muscle it should she’s got about 40 per cent, so she’s got very little muscles which affects her strength and she gets fatigued very easily.

“It also affects the bone development around the ligaments because things get pulled tighter. Her feet were dislocated when she was little so she’s had a lot of operations.”

“Because the heart is a muscle she has heart issues. Her lungs are underdeveloped as well. She’s down to one lung of development at the moment.

“It mainly affects her in her range of movement, in strength, and in being able to keep up.”

“She’s also got scoliosis which is a curve in her spine and she’s looking at going into hospital to have titanium rods put in. Her spine is curving forwards and it’s pushing her lungs and her heart up against the inside of her chest.”

In the 12 months since Leonie started riding Zara has seen a measurable improvement in her condition.

She said: “It’s helped her in her fight because she’s getting stronger and her lung function is improving.

“One huge benefit we’ve seen is because she’s riding so much and she’s exerting herself she’s gone from having probably 12 to 13 chest infections a year to having just one in the year since she started riding.

“She’s a lot healthier in general and has a lot more stamina, and she’s been able to do more in school because of that.”

Not only is the horse riding improving Leonie’s stamina and strength, but it’s also postponing her impending operation.

Zara said: “She had an MRI scan eight months from when she started riding and her curve had actually gone backwards which had never happened before.

“Riding is obviously doing her the world of good so the focus for us at the moment is getting her on the horse as much as we can and keep her riding to keep her strength up.

“If we can put it off until she’s 15 or 16 all the better because once they do the operation and the drill the spine she won’t get any taller.”

“It’s a huge operation. She’s going to be in surgery for about 18 hours so the longer we can leave that for her to get stronger the better.”

The Clwyd Special Riding Centre caters for 200 riders a week and is home to 23 horses and ponies. It is run by eight members of staff as well as a dedicated group of volunteers, headed by 12
Trustees.

The Centre of Excellence has impressive facilities, including an indoor arena, an outdoor arena, a 1.5 km track, offices, staff accommodation.

Among those who use the facilities regularly are Wrexham, Dyffryn Ceiriog and Hope Mountain Riding for the Disabled Association groups.

The centre is the only one of its kind in the UK to provide holiday accommodation for disabled riders.

It has hosted groups from as far afield as Poland, Kosovo, Chernobyl, Russia and Hong Kong.

Phillip Gerrard Jones, a Trustee of the charity, said:  “We provide people with additional needs the opportunity to ride, carriage drive or equestrian vault to benefit their health and well being.

“There is a lot of work involved in ensuring that everything is good working order, and the costs have increased dramatically over the last few years.

“We need £5,000 a week just to keep going. It’s a huge amount, so every donation we receive counts.

Phillip was blown away by the way Britain’s Paralympians performed at London 2012.

He said: “I am extremely proud of our Paralympians, and the Team GB horse people were fantastic in the Olympics and the Paralympics.

“I think the London 2012 Paralympics were a huge success. I believe it will change people’s perceptions of the disabled, not only in sport, but in general as well.

Leonie has certainly been inspired by the Paralympics.

Zara said: “She’s watched it constantly and the regular Olympics. She’s enjoyed the different events like the dressage and the jumping. It’s not going to be long until she wants a little jump herself!

The Clwyd Special Riding Centre is where former Paralympic Gold Medallist Nicola Tustain honed her skills. Nicola regularly returns to her own stomping ground to give riding lessons.

According to Zara this has helped Leonie improve her riding skills.

She said: “Somebody who is a Paralympic athlete like Nicola Tustain who has got no use in one arm and limited use in one leg so knows how difficult it is to do something on a horse that an able bodied rider would just take for granted.

“She knows what adaption’s disabled riders have to make versus a regular rider.

Leonie regularly take part in competitions such as the RDA National Championships at Hartbury Equine College in Gloucestershire.

Zara said: “It gives her a lot of confidence. She doesn’t do things like sports day so to being able to take trophies rosettes that she’s won in to school and for them to make a big issue of it means an awful lot to her. It gives her a big sense of pride and achievement”

Leonie certainly enjoys horse riding.

She said: “I love spending time with the horses and learning with them, and doing well in competitions makes me feel very proud.”

Zara added: “It’s something she took to straight away and hopefully she’ll be able to do for a long time”

For more information about the  Clwyd Special Riding Centre and how to make a donation ring 01352 770446 or go to www.clwydspecialridingcentre.org.uk