Slane Castle turns purple for young Laragh

Slane Castle has turned purple for the month of October to mark Rett Syndrome Awareness Month. Rett Syndrome is a rare genetic X chromosome-linked disorder that affects approximately 1 in 10,000 girls born in Ireland. Lord Henry Mount Charles is illuminating the Castle as a tribute to his eight-year-old granddaughter Laragh Conyngham, who was diagnosed with Rett Syndrome in 2015. She is the daughter of Alex Conyngham, Henry’s eldest son and co-founder of Slane Distillery. 
 
Alex and his wife Carina spent three years trying to achieve a successful diagnosis for Laragh, who has a rare, mild variant of Rett with preserved speech. 
 
Rett Syndrome is a rare and regressive condition, that almost only exclusively affects females, and impacts physical and intellectual skills. The condition is characterised by normal early development followed a period of regression where skills are lost. 
 
Most sufferers of Rett Syndrome are confined to a wheelchair, however, as awareness of Rett grows, an increasing number of sufferers display milder variants of the neurological disorder, meaning that they can walk, and in some cases talk, but in all cases suffer from a range of symptoms that are similar to autism, epilepsy, parkinson's, cerebral palsy and anxiety.  
 
The Rett Syndrome Association of Ireland (RSAI) www.rettsyndrome.ie supports people with Rett Syndrome and their families, and the focus of this Global Rett Awareness Month is to promote swifter diagnoses for all variants of Rett in Ireland. Statistically, there should be over 300 cases of Rett in Ireland but less than 75 cases are known to the association. RSAI also helps to raise funds for Reverse Rett (www.reverserett.org) and its consortium of scientists that are working towards a cure. 
 
Alex and Carina Conyngham said: “Raising Laragh has presented some challenges but also given us a great amount of joy. The real struggle was achieving a diagnosis to enable us get the help and support that she needs. As genetic tests and analysis for the condition are not currently available in Ireland, a diagnosis was only possible by working with medical teams in the US and the UK.”
 
“Our hope is that by building awareness of Rett Syndrome and achieving earlier diagnoses it will help other families who are struggling to find out what is wrong with their children in the same that way we did. There is now a potential cure for Rett so our aim is to generate awareness and raise funds for the latest human trials for reversing the symptoms of Rett which could radically improve the lives of those affected, and their families.”
 
In 1999, Baylor University in Houston, Texas identified the mutations in the MCEP2 gene that causes Rett Syndrome. Since then, the scientific community began to work towards identifying treatments to alleviate the symptoms of the condition. As one of the few neurological disorders to show dramatic symptom reversal in mice, Rett Syndrome has now attracted significant interest from universities and pharmaceutical companies who are now working towards a potential cure. This includes work led by Dr Daniela Tropea of Trinity College Dublin who is seeking to set up an National Centre for Rett Syndrome in Ireland to help further research in Ireland.  
 
For those in the Republic of Ireland, text RETT to 50300 to donate just €4.00 to the Rett Syndrome Association of Ireland. 100% of donations will go to The RSAI across most network operators. Some operators may apply VAT meaning a minimum donation of €3.25 will be made. Service Provider: LikeCharity. Helpline 0766805278
 
For those outside the Republic Ireland, donations can be made by visiting the donate page of the association’s webpage www.rettsyndrome.ie