Walk over hot coals to help with rare disorder
The ultimate glass and fire walk will take place at the Martello in Bray on Friay, September 30.
Organisers are hoping that brave participants will come forward to take on the challenge and support the cause. This event is being held to raise money and awareness for the neurodevelopment disorder CDKL5.
Alan Connolly was inspired to found the event because his daughter Alex has CDKL5. He was one of the walkers to do the firewalk in 2015.
CDKL5 is a very rare disorder affecting one in every 100,000. With only six cases in Ireland, the disorder is mostly common in girls. Symptoms include seizures, breathing irregularities, visual impairment and feeding difficulties, as well as absence of speech, poor muscle tone, sensitivity to touch, and difficulty sleeping.
Entertainment will be provided by Bog O’The Loughs, Joe Petit & The Dream Band, Samba Dance Brazil and MD Adrian Kennedy from 98FM.
Comedian Adam Burke, musician Robbie Doyle, Kayleigh Noble and Joseph McVeigh are also on the line-up. To sign up or find out more go to www.cdkl5.ie.
All of the girls with rett syndrome or CDKL5 suffer with epilepsy starting at a very early age, normally within the first six months of their lives.
Other complications that occur are development regression, gastrointestinal problems with symptoms of Parkinson’s, autism and anxiety. Most of the girls are confined to wheelchairs and require 24hour care seven days a week.