A heartbroken former Antrim man, whose son passed away suddenly in May this year, has called for greater awareness into epilepsy.
Thirteen-year-old Jordan Scott suffered from night-time epilepsy and his father Jonathan said he believes there needs to be more information widely available on the illness.
Speaking exclusively to the Times’ sister paper, the Mid-Ulster Mail, after a number of successful fundraising events in Jordan’s memory, Jonathan is calling for to be more action done to improve awareness of epilepsy.
He said: “I don’t think there is enough education or awareness out there about epilepsy. In Jordan’s case he had night-time epilepsy meaning he took his seizures at night and it was very difficult we found, as there was limited information available for us.
“There are still investigations ongoing into Jordan’s death as they haven’t been able to yet establish a definite cause of death.
“There is a thing called SUDEP, which is ‘Sudden Unexpected Death in Epilepsy’.
“I would really like to see more awareness and information widely available out there for people to access, particularly in relation to SUDEP.
“There is very limited funding for the charity which is why it is important to get the message out there.”
According to figures from Epilepsy Action Northern Ireland, there are over 1,600 school-age children with epilepsy, and in Northern Ireland as a whole, 20,000 people have epilepsy, one in 90 of the population.
Speaking about his son’s ‘love for life’ Jonathan said Jordan just never let his illness get the better of him. “He continued to do the things he loved and always had ‘a cheeky smile’ for everyone he met.
“Jordan loved sport in general. He loved his football, he loved tennis, from a young age he was into wrestling, he just loved life,” Jonathan said.
He added: “In the months before his death, Jordan had also taken up Archery and he had become very good at it. He really took to the tennis and obviously his football- he was a big Liverpool fan, you can blame me for that.”
Following Jordan’s death, his family received a letter from Liverpool FC with kind words from the Liverpool Foundation team, from the players directors and staff and the supporters on the loss of a very keen supporter of LFC.
A series of charity initiatives organised in memory of Jordan have raised over £8,000 for Epilepsy Action NI.
Speaking about the fund-raising efforts, Jonathan said: “We had four events, we had the money which was donated through the funeral directors after Jordan’s death, then Cookstown High school kids ran an event where they had Britain’s Got Talent star Jordan O’Keefe perform at a charity concert where the money was split evenly between Cookstown Cancer Community and Epilepsy Action Northern Ireland.”
He continued: “Jordan’s friends and cousins also organised a wee charity football match which raised £2052. Jordan played for Cookstown Youth Under 14s and they ran a draw at their annual dinner which raised £1500 and the Mid Ulster Youth League raised £350 so that combined raised £1850.”
“Between the four events over £8,000 has been raised for the charity which is brilliant.
“On behalf of Jordan’s family, his mother Samantha and myself would like to thank everyone for their kind donations to Epilepsy Action for Jordan.
“The charity really struggle to get any help and any sort of funding, which is why the money that has been raised in Jordan’s memory will go directly to help the charity run campaigns to try and make more awareness of epilepsy across Northern Ireland.”
For more information on Epilepsy Action Northern Ireland please visit www.epilepsy.org.uk/involved/branches/nireland