Epilepsy is a brain condition which affects over 50 million people in the world, with half of all cases beginning in the early stages of life. With 2.4 million new cases reported each year, the stigma surrounding epilepsy only grows, but the teams from Sydney’s west were determined to reach out and help one young girl with the condition.
This season, Western Suburbs offered potential sponsors the opportunity to purchase a single sleeve for $1000, and the associated sponsorship package incorporated an opportunity to spend a pre-match preparation with their sponsored player. One generous Magpies fan paid their $1000 and donated the sponsor’s spot to Epilepsy Action Australia, the largest provider of specialist epilepsy services in the community for people with epilepsy and other seizure disorders.
Upon hearing of this donation, the Magpies and Tigers decided to take it that one step further, and, with support from their supporter, offered an opportunity to one special young person a chance to spend a day with their heroes at a Western Suburbs and Wests Tigers home game, spending the prematch warmup with the players and joining them in the sheds after the game to meet the players.
Ellee-Rose Bessenyei, an 11 year old from Engadine, was the lucky winner.
“I have been to two games this year, but lots all together,” an excited Ellee-Rose said, after calling all the friends and family she could think of to tell them she had won the competition and what she loved about rugby league. “I like watching the players pass the ball, and watching the cheerleaders.”
Ellee-Rose’s mum, Melissa, was thrilled that Ellee-Rose won, given the daily challenges she faces in her life.
“Caring for a child with Epilepsy is very challenging at times,” says Melissa. “Her epilepsy has caused her to have other illnesses such as ADHD, Autism and Sensory Processing Disorder. As epilepsy affects the brain with every seizure, learning disabilities are a part of her life.”
Melissa says, though, that Ellee-Rose understands her condition, which makes it easier to manage. “Ellee-Rose’s epilepsy does impact in a way, with getting on with her peers, in that she is more reserved. She deals with her epilepsy very well though. She’s starting to know her limitations, when she’s not feeling well, and that she has her medication every day .”
Despite her condition, being a Wests fan, whether of the older Magpie variety or the newer Tiger variety, is in Ellee-Rose’s, and Melissa’s, blood. “My dad has been avid Magpies fan since he was born he is now 64 years old, so we’ve all grown up to know and love the Magpies and Tigers,” Melissa says. “Sitting on the hill at the old Campbelltown Sportsground brings back lots of memories.”
Western Suburbs Magpies Chairman Mick Liubinskas says epilepsy has been a part of the Magpies fabric for a while.
“Sadly, epilepsy indirectly took the life of arguably the favourite son of Western Suburbs in John ‘Dallas’ Donnelly,” Liubinskas says wistfully. “Dallas was a big personality, and while, for most people, epilepsy was a somewhat distancing experience, it brought our club together, and our media man is passionate about promoting the cause, as he had epilepsy when he was younger.”
With epilepsy featuring so prominently in the Wests story, Epilepsy Action Australia (EAA) CEO Carol Ireland was only too happy to bring Wests on board in the effort to promote awareness of the condition. “Epilepsy is often an unknown quantity in the community such is the lack of exposure and misunderstanding surrounding the condition,” Ireland says. “It is often misunderstood as a mental illness, or even public drunkenness, which is frustrating as so many people with epilepsy lead normal, happy lives, including former Queensland State of Origin captain Wally Lewis.”
Ireland, though, knows too well the challenges faced by regular families. “Every day we face new difficulties in assisting families affected by the condition. Some families are affected more than others, and we tailor our programmes to assist whenever possible.”
Melissa Bessenyei has nothing but praise and thanks for EAA too. “EAA is incredible. They have been such a help to me in that they update Ellee-Rose’s management plan for school constantly, come out to the school to do information sessions for the teachers, and are there anytime I need questions answered.”
Wests Tigers CEO Grant Mayer couldn’t have been happier to accommodate Ellee-Rose on a special day for her. “Wests Tigers are pleased to be involved in important causes such as this,” said Mayer. “The Club will continue to work closely with all of our partners to continue to support such worthy causes into the future and are very happy to have been able to assist in Ellee-Roses’s special day.”
Although two of Ellee-Rose’s favourite players in Benji Marshall and Lote Tuqiri no longer wear the black, white and gold, she still got a thrill when her other favourite player handed over a special Magpie-Tiger merchandise pack. “I loved Robbie and Keith (Galloway),” Ellee-Rose beamed afterwards
Although the Wests family saw their offering as small in the grand scheme of things, Melissa couldn’t have been happier with the look on Ellee-Rose’s face.
“It meant the world to my husband Darren and I to see Ellee-Rose meet the players. She had a permanent smile on her face all day. “
So how much did Ellee-Rose enjoy her day out?
“It was excellent meeting all the players, and getting to go in all the rooms and see the man on the microphone (Wests Tigers ground announcer Tommy Herschell)!”
And that’s all a little girl ever wants.
TO LEARN MORE ABOUT EPILEPSY, OR TO DONATE, VISIT EPILEPSY.ORG.AU OR CALL 1300 37 45 37