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UID:0ab35011a3d39b7869a4d8eee281cbfa
CATEGORIES:British Club Trials Event
CREATED:20191205T130219
SUMMARY:Dalmellington MCC Charity Trial for Cystinosis!
LOCATION:Ashmark Farm
DESCRIPTION;ENCODING=QUOTED-PRINTABLE:\n\nHeld at Ashmark Farm, New Cumnock. 11am start with a £15 entry fee.\n\n
 \nAll classes catered for, with A, Mixed and B routes available.\n\n\nThere
  will be a raffle held with all money going to the Cystinosis chairty.\n\n\
 nPlease take a minute to read the information written by Emma & Stevie Guil
 d whos daughter lives with this disease.\n\n\n \n\n\nErin Guild was bo
 rn a happy healthy wee girl in august 2008, approaching her 1st birthday Er
 in stopped thriving, she was sick, thirsty and in a lot of pain. Doctors in
 itially thought it was a virus or infection then eventually we got referred
  to hospital where the first thought was diabetes.. After numerous hospital
  appointments at Crosshouse, a consultant who had worked previously at York
 hill spoke to us about a case he had seem identical to Erin’s.. and that’s 
 when our journey with Cystinosis began, Erin being only 14 months old.\nCys
 tinosis is a metabolic disease caused by a build up of cystine which stops 
 cells from working properly therefore prevents the organs from working prop
 erly – Initially the kidneys and eyes, but will move onto muscles, pancreas
  and brain. The cause of this condition is genetic and only approx.. 200 su
 fferers in the UK and only approx.. 2000 worldwide.\nTo keep Erin as health
 y as we can for as long as we can she has a strict medicine regime; medicat
 ion at 6am, 8am, 8:30am, 12pm, 3pm, 6pm, 8pm, 9pm then midnight. All the me
 dications are different and the side effects can make her feel very yucky. 
 She also has eye drops and a medicine which gets administers through a gast
 rostomy straight into her tummy. Erins bloods are closely monitored every 1
 0 weeks and a kidney transplant will probably be required, but for now e ar
 e so grateful that her kidney function is stable.\nWe are very lucky that E
 rin – now 11 – is mobile and very active and I so determined that this cond
 ition will not make her different – taking the bad days with the good days.
  Erin ALWAYS has a smile on her face.\nThe cystinosis foundation is run by 
 volunteers ensuring that all money raised goes straight to the research pot
 , aiming to find better treatment and ultimately a cure! Good progress with
  medications and how often they will be taken, are being made so far.\nWe a
 re very proud of our daughters bravery and continuous positive attitude to 
 life, with the determination and strength to get through every day.\n\n\n&n
 bsp;\n
CONTACT:Heather Anderson 01659 50137
DTSTAMP:20260428T025012Z
DTSTART:20191215T080000Z
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