By Margaret Maccoll
A fund-raising walk will be held in Noosaville in October to raise money for research into a rare incurable disease in honour of local girl Jasmin Green, 13, who has suffered with the illness since she was three months old.
Dravit Syndrome is a rare catastrophic life-threatening paediatric epilepsy with no known cure.
Jasmin’s mother Susan Paynter said Jasmin was born a happy, healthy baby who had a seizure at 12 weeks of age. The next five years of Jasmin’s life was spent in a mix of seizures, hospital visits, tests and medicines.
“An average seizure for Jasmin was a minimum of 35 minutes requiring medical intervention, ambulance and hospital,” Susan said
“At the age of one and two years old she had seizures that the emergency medicines would not stop. The doctors were given no choice but to put her into drug-induced coma and helicopter her to Royal Children’s Hospital ICU.
“At two years of age Jasmin regressed. Talking and walking became a real challenge.”
Jasmin was diagnosed with Dravet Syndrome at four years of age and over the years has tried numerous different combinations of seizure medications but seizures still persist.
“We have learnt the many triggers for her seizures and do our best to avoid them,” Susan said.
“Even with these precautions she can still have a seizure. Last year alone Jasmin broke her front teeth, cut her eye, grazed her face and back along with bumps on her head. Someone has to watch Jasmin 24 hours a day. Her activities have to be limited as she can’t regulate her own body temperature. She overheats very quickly and with that comes a seizure. We have to live minute by minute as every decision is made depending on the time of the day, the temperature and Jasmin’s ability to cope.
Despite these challenges Jasmin, now 13, is a miracle to her family.
“Every day is a blessing as many other Dravet’s children have moved on to heaven way before their time. She is our shining light. She is loving, forgiving, affectionate, social and enjoys every minute of her life. She has never complained, ever. She brings a smile to my face every single day.”
The inaugural 5k 4 Dravet walk on 7 October will raise money for Molly’s Fund to support research into Dravet Syndrome and assist families of children with the syndrome. Molly’s parents set up the fund in honour of their daughter, Molly, a friend of Jasmin’s who died at the age of 12.
The volunteer-run walk which will begins at Noosaville State School hopes to raise $2000-$4000 through its entry fee of $20 per person, $40 per family, sponsorship and a sausage sizzle.
For more information, to register or sponsor the event visit www.gofundme.com/jv5ber-5k-4-dravet
