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The P.I.L.A. Girls Gayle – Admin [family friend] Elaine – treasurer [Lleyton god mother & his dad’s auntie] Joanne – treasurer [Lleyton mum] Hayley [Lleyton grandmother] City of Salford fundraising number 093816

Hello my name is Lleyton Macaulley Coombes. Born 17th Dec 2006 in Hope Hospital Salford & live near Salford Precinct. As a new born I suffered with jaundice at birth like a lot of babies do, but after some weeks the doctors started to do test as my billirubin was not normal. Then after 6 months if intensive tests I was diagnosed with Niemann pick Type C, this is neurological illness that is life limiting and is a very rare disease, fortunately for Lleyton and the family the specialist for this condition is based at royal Manchester children’s hospital here in Manchester so he was diagnosed fairly early, life expectancy of sufferers is 10/15 years of age the earlier you are diagnosed the earlier the symptoms start to show and the earlier the decline which will result in death, those affected will usually develop dementia as a symptom of the disease. This is taken from the NPDG’s website as a simple explanation of the condition: An accumulation of materials (cholesterol and other fatty acids) in the body's cells. The brain and other organs are affected, leading to progressive intellectual decline, loss of motor skills, seizures and dementia. Speech can become slurred and swallowing problems may develop, in the later stages the child may be bedridden and tube-fed. Affected children do not usually survive into adulthood. Most of the symptoms are similar to Alzheimer’s because of this it has been dubbed Baby Alzheimer’s by the Media. There are approximately 50 to 80 children diagnosed with this condition in the UK [it is sometimes mis-diagnosed as ADHD and other similar conditions – this is why there are no accurate numbers] and 500 worldwide Because of this there is NO Government funding. We need to raise awareness & funds for research into the FATAL condition symptoms are: *Enlarged spleen *Enlarged liver *Learning difficulties and progressive intellectual decline *Seizures *Slurred, irregular speech *Sudden loss of muscle tone which may lead to falls (cataplexy) *Tremors *Unsteady gait, clumsiness, walking problems (ataxia) If you require proof of Lleyton’s Illness we can get his clinical research nurse to contact you, she is located at the Willink genetics unit,


6th floor, Central Manchester Children’s/St Marys Hospital in Manchester. Currently there are about 100 children in the country with this condition so the Government will not assist. Initially we were trying to raise money to help Lleyton and his family fly to the National Institute of Health in Maryland USA to participate in Clinical Trials of Cyclodextrine. These are new trials that have been given the go ahead, but we are unsure when exactly this will happen, How ever we have been informed that these trials will be available here in the UK in the not to distant future, but a specialist nurse is required to administer the drug as it is injected into the brain, the nurse would need to be funded so this is now what we are raising money for. Also we are making memories not only for Lleyton but his mum and dad for their future. Lee Coombes a Chef by trade [Lleyton’s dad] works at Marble Arch Pub Rochdale rd Manchester Lee had Osteosarcoma in his tibia at 15, was treated at Christie young oncology unit, RMCH and Birmingham orthopaedic hospital, and then again at 17 he had secondary metastases in his lungs from the bone cancer, again treated at Christie Y O U, and Wythenshawe hospital. We realised there was something wrong when he got studded by his friend at footie, but the swelling did not go down so we took him to A & E where they realised there was something not right and sent us to RMCH. Lee was having problems in 2012 with some pain in his leg; Lee visited the Royal ortho in Northfield Birmingham. Because He had Bone cancer when he was a teenager They removed most of his leg bones and knee and fitted an artificial one in his own skin and after x-rays it looked like part of it had broken, during test it was discovered he had cancer in his other leg [this has now been amputated] and lee is now learning to walk with a false leg. Lee met Jo when he went back to college after his treatment and they were on the same catering course at Della Salle College also in Salford. They found out she was expecting a year later. Jo Gresty also in Catering [Lleyton’s mum] Joanne Louise Gresty also Born in Hope Hospital 11/08/88, went to Langworthy road primary & Buile Hill High then attended Pendleton college where she met Lee on a Hospitality and Catering Course. Jo has stayed in Salford Working at Burger King, Imperial War Museum, White Horse, Texas chicken and is now full time carer to her son Lleyton. in the limited amount of spare time she has she helps run a Morris dancing troupe in Swinton and has danced for over 10 years herself, We are looking for Individuals & Companies to donate items & or Expertise as we are in the process of arranging several events which need venues and or raffle, auction items and some times food we also need a printer [who can do really good mates rates] We are looking for a well known face that could help us raise awareness, which in turn would help us raise funds. If you know anyone who would be willing to plug the Cause let us know also we are in the process of trying to do a charity record to raise funds for the NPDG to help raise awareness, so we are looking for a singer or band who could do this [a local group have shown interest in doing this – so we are about to have talks with them] but they always help the cause and don’t want to take advantage PUBLICITY & PROMOTION ALWAYS NEEDED - newspaper’, magazine’s, radio, TV we need our events out their & in the public eye and media can any of you help us to promote any of our event & #npc – PLEASE contact lleyton@hotmail.co.uk – thanks xx We can always use venue’s if you own or know of any we could use free of charge we would be eternally thankful [your bar taking will be quiet high]


Some events we are in the process of arranging for 2013 Charity Fire Walk [Sunday 10th march 2013 at Swinton golf club] Charity fashion show – Swinton park golf club thur 2nd oct 2014 Charity ladies night – Swinton park golf club [fri 25 th july 2014] Charity footie match & music concert - Manchester music scene v Celebs [need venue] Charity rugby match Ex-Pro’s v Army [venue needed] Charity Zumbathon [Swinton golf club – waiting for dates] Charity family Race Night [need venue] Charity ball type event [big venue needed ?] Charity reverse bungee [as seen on ant n dec] 2015 To find anything out about Lleyton follow any of the options below: Lleyton’s website – www.prideinlleyton.co.uk Email lleyton@hotmail.co.uk Lleyton’s twitter page - twitter@prideinlleyton Face book - https://www.facebook.com/#!/groups/prideinlleyton/ Umbrella group - http://www.niemannpick.org.uk/what_is_npd/type_c.html we are 4 mums trying to raise awareness & funds for this killer condition, we can not offer payment for your services as We do not have a committee behind us nor do we have a corporate sponsor – we ask if you would kindly donate them to the cause in return we can offer publicity and unconditional thanks. We are always looking for artistes – singers, bands, groups, comedians, magicians, dancers, physics, Dj, face painters, balloon modellers, puppeteers, printers, publicists. Company sponsors are always welcome on board. Thank you for taking time to read this Lleyton - a childhood to live a life time xxx


1 hello my name is lleyton press release 2014