Fundraiser for Garndiffaith baby suffering from blackout disorder
5:02pm Friday 23rd August 2013 in News
Charlotte Robinson (left)and Amii Buffin (right) are organising a fundraising event for STARS after Amii's son Louis Owen (centre) was helped by the charity (916034)
AT JUST six months little Louis Owen was diagnosed with a heart rhythm disorder which causes him to blackout.
Now the 18-month-old has inspired his auntie to hold a fundraising evening in aid of the charity which has supported him.
Charlotte Robinson will hold the event at Talywain Rugby Club tonight to raise funds for Syncope Trust and Reflex Anoxic Seizures (STARS), which has supported her nephew Louis who was diagnosed with reflex anoxic seizures (RAS).
RAS mainly occurs in young children and can mean that any unexpected stimulus, such as pain, shock or fright causes the heart and breathing to stop temporarily and the child to become deathly white.
RAS is often misdiagnosed as epilepsy or temper tantrums, and is not life threatening, with children often growing out of RAS.
Louis is the youngest of four brothers and his mum Amii, from Garndiffaith, called on the support of the charity after Louis experienced his first RAS episode aged just six months.
His disorder was only spotted by a health visitor to their house who recognised the symptoms and an official diagnosis was given at Panteg County Hospital.
Miss Robinson, 25, is keen to fundraise for the charity that supported her sister.
She said: “I hope the night will raise lots of money for STARS. From music and dance to games and raffles, there will be something for everyone.
“I have lived through Louis’s fits through my sister’s vivid descriptions of what happens when he suffers a seizure. Promoting awareness of this condition is key to make sure those who continue to experience seizures know that they are not life-threatening and know what to do.”
STARS aims to ensure anyone with unexplained loss of consciousness receives timely and accurate diagnosis, effective treatment, support and signposting to appropriate medical professionals.
STARS founder and CEO, Trudie Lobban MBE, said: “I am thrilled that Charlotte has planned such a great event in support of STARS.
“Louis is incredibly lucky to have received a diagnosis so promptly. Through a correct diagnosis, Amii is now better able to better manage his condition.”
For more information contact Talywain Rugby Club on 01495 772597.
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