Dalmellington MCC Charity Trial for Cystinosis!

  Sunday 15 December 2019, 08:00am
 
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Held at Ashmark Farm, New Cumnock. 11am start with a £15 entry fee.

All classes catered for, with A, Mixed and B routes available.

There will be a raffle held with all money going to the Cystinosis chairty.

Please take a minute to read the information written by Emma & Stevie Guild whos daughter lives with this disease.

 

Erin Guild was born a happy healthy wee girl in august 2008, approaching her 1st birthday Erin stopped thriving, she was sick, thirsty and in a lot of pain. Doctors initially 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 Yorkhill 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.
Cystinosis is a metabolic disease caused by a build up of cystine which stops cells from working properly therefore prevents the organs from working properly – Initially the kidneys and eyes, but will move onto muscles, pancreas and brain. The cause of this condition is genetic and only approx.. 200 sufferers in the UK and only approx.. 2000 worldwide.
To keep Erin as healthy as we can for as long as we can she has a strict medicine regime; medication at 6am, 8am, 8:30am, 12pm, 3pm, 6pm, 8pm, 9pm then midnight. All the medications 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 gastrostomy straight into her tummy. Erins bloods are closely monitored every 10 weeks and a kidney transplant will probably be required, but for now e are so grateful that her kidney function is stable.
We are very lucky that Erin – now 11 – is mobile and very active and I so determined that this condition will not make her different – taking the bad days with the good days. Erin ALWAYS has a smile on her face.
The 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.
We are very proud of our daughters bravery and continuous positive attitude to life, with the determination and strength to get through every day.

 

 
Contact  Heather Anderson 01659 50137
Location  New Cumnock, Ayrshire Scotland
 
Links to any Regs/Entry Forms relating to this event will appear below