“We want Molly’s memory to live on and help others,” say Sunbury’s Kellie and Mick Clohessy, who lost their daughter to Dravet syndrome (DS) in 2012, just two months off celebrating her 12th birthday.
To help other children, the couple launched a fund in Sunbury on Sunday to raise money for research for the condition that cut short their daughter’s life.
DS, also known as Severe Myoclonic Epilepsy of Infancy, is a rare form of epilepsy. Children with the condition often have prolonged seizures – Molly’s sometimes lasted between 20 minutes and three hours. One seizure lasted up to six hours.
It is a condition children do not outgrow and it affects every aspect of their daily lives.
Molly had her first seizure when she was eight and a half months old, and seven months later was diagnosed with epilepsy. At three years old, she became the first child in Australia to be diagnosed with DS.
Molly attended Kismet Primary School until grade 5, and later Sunbury and Macedon Ranges Specialist School.
“A lot of children are non-verbal and wheelchair-bound. We were fortunate with Molly that she was as able as she was,” Mrs Clohessy said.
In 2010 Molly had a seizure that put her in a coma for two weeks. The year that followed, Mrs Clohessy’s attention was focused around her daughter’s rehabilitation.
“She was really good after that, she had no seizures for almost two years, and then the last one took her life.
“She died eight weeks off turning 12, which was something she was really looking forward to. She was very excited about her birthday.”
Mrs Clohessy wants to create awareness of the condition during Epilepsy Awareness Month, held throughout March. She wants people to hold a morning tea on the third Sunday of March every year to raise awareness of DS and hopes to bring Dravet-affected families together for a meeting every two years.
“There’s about 170 families that have a child with Dravet syndrome and research is only 10 years old, it’s very new. We need to fund-raise for research to find the best quality of life for children with Dravet.”
