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28th May 2009 | 18:16
Ollie Liley (By Sarah Gillbard, August 06)
In July 2006 Ollie Liley died aged 14, after a three year struggle with the debilitating illness, Adrenoleukodystrophy, known as ALD. Ollie Liley was locally known for many years, as an up and coming rider with potential. More recently it was because of his illness. He was born In Nottinghamshire. Father, Mark Liley, is a Yorkshire man, who came from near Huddersfield and his mother, Gail Liley, came from Pickworth, in Lincolnshire. Ollie has a brother, Sam, who is 17. Family life functioned as normal until 2003.
Ollie on 'Get Ready Freddie' Up until this time Ollie had achieved so much in his young life. Sam took up riding, which got the family into riding, followed by Ollie. He took up riding at seven years old, had lessons at the local riding stables, Dovecote Farm, in Orston and joined the local South Notts Pony Club. His interests were particularly in "The Prince Philip Cup Games" and show-jumping. His first pony was called "Tickle"; a chestnut Welsh gelding.
Gail was keen to encourage him and other local riders to get involved and very soon they were off to competitions and events all over the place. Sophie Green, Danielle Willett, Amy Pownall, Hannah and Becky Tongue were off all over the county. Soon this expanded, as they became successful, to further a field. Gail bought a pony for Ollie called "Get Ready Freddie" from Carol and Stephen Whitaker's show-jumping yard.
By 2002 0llie had qualified and ridden at Hickstead and at the "Horse of The Year Show"; at the latter he came 7th. He rode for the England Team in the 12Bcms category, under 12s. In 2003, he qualified for the same shows, but was unable to ride due to the diagnosis of ALD.
The rare disease, ALD (Adrenoleukodystrophy) was raised in profile by the film about "Lorenzo’s Oil" in 1992. It is a progressive degenerative myelin disorder. Myelin, the "insulation" around nerves, breaks down over time. Without myelin, nerves can't function normally, or at all. Unfortunately, the body can't grow replacement myelin, so the disorder is progressive--it gets worse over time.
Oliver Liley It affects boys but girls can be carriers (It is thought that one in 20,000 boys is born with the genetic disorder). There are several forms that ALD can take. The most devastating type, which Ollie had, is the childhood cerebral form, meaning that nerves in the brain are destroyed. About 35-40% of all cases of ALD are this type, which usually appears between 4 and 8 years of age in boys. These boys will become totally disabled in 6 months to 2 years, and will die some time after.
ALD can also appear like Multiple Sclerosis, in that there is a gradual loss of function in the body but without the severe brain damage of the cerebral type. This second form is called adrenomyeloneuropathy (AMN), and represents about 40-45% of all ALD cases, and affects men in their twenties or middle age.
The diagnosis was made when Ollie fell off the trampoline when aged 12 and had concussion. He spent three nights in hospital. at the Queen's Medical Centre in Nottingham. They ran tests and ALD was diagnosed. The family were told the devastating news and realised very quickly that there is no known cure. They have since pursued their own research and become very pro-active in raising funds to support research into ALD. Other symptoms prior to this had been Ollie's forgetfulness that seemed to cause enough concern that Gail had been several times to discuss it with her GP.
Currently, they have been funding scientists to research the causes of AlD, so that one day they may be able to find a cure. There is plenty still to do and since Ollie has died they are planning to get more involved with raising the profile of the disease and to raise funds for research through a charity.

This early autumn, Mark is off to a meeting of scientists and doctors involved with ALD to try to put together a strategy for the next three years. The intention is to create a package to fund a scientist, a PhD student and a Biological Researcher to find out the causes of ALD. It is a world issue.
Gail said that, "Ollie was able to ride, albeit that he was nearly completely blind, until last year. One story is of a pony that belonged to some very good friends, The Lithgow’s in Scotland. 'Little Bobby' was this stallion's name. It never liked anyone very much, except Ollie. It seemed to have an understanding of Ollie's predicament and was as quiet as ever with him. They would walk out together and he never put a foot wrong whilst Ollie was on him."
Mark and Gail are putting together a strategy to create a charity and website. Since Ollie has died, funds have been raised by various horse shows, clubs and individuals. Norton Heath in Essex (horse show) raised £2,500. Lanark Home Pony Show £1,400. Orston Village £2,500 and £900 have come in from various individuals who chose donations over gifts for presents. This money is being given directly over to research.
The Lileys have funded scientists in Europe to the tune of £85,000 so far. £12,444 has been raised in the last few weeks! If there is anyone out there who would like to know more or get involved with fundraising then please call Gail and Mark Liley on: 07973 550934 or 01949 851606. Alternatively, email gailliley@aol.com Mark has offered to donate mobile phones as raffle prizes for any such event.

Click on this link and listen to Gail talking about Ollie
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£755,964.57