Massage marathon will help little Isla
A massage marathon will be held at CrossFit Great Stour in Leacon Road, Ashford, from 9am on Saturday to raise money for alternative therapy for threeyear-old Isla-Rose Simmons, who suffers from Dravet syndrome.
Isla-Rose was perfectly healthy until she suffered her first seizure when she was nearly five months old.
Her mother, Rachael Thomas, from Hawkinge, said: “Everything was normal, but then when she was four-and-a-half months old she had a seizure.
“It was like a stroke, one side of her face dropped and it went on for hours.
“Six weeks later she had another seizure, then two weeks after that she had a third one.
“Isla was taken for tests. They ruled out brain tumours so she had to have genetic testing.
“That’s when they discovered she had Dravet syndrome, which is a mutation within a gene. It’s a life-long condition which can’t be cured. We can only try to control it.”
Dravet syndrome is a rare form of epilepsy, affecting one in 15,700 people. It usually appears in the first year of life and causes frequent and long-lasting seizures. As the baby grows older, Dravet can also affect language and speech, cause behaviour and development delays, issues with growth and nutrition, balance and movement problems, and orthopaedic issues.
After being diagnosed with the rare condition, Isla-Rose was having a seizure every six weeks.
By the time she was 15 months old, she had been put on life support four times.
Then one seizure just would not stop.
Ms Thomas said: “She had a big seizure when she was 15 months old which left her on life support for two weeks and caused brain damage. It had never been mentioned to us as she normally recovered well and she was hitting all the milestones for babies of her age.
“Isla became like a newborn again and she lost everything – her eyesight, the ability to talk or to move.
“She was also suffering from dystonia, which are muscle spasms that are so strong they can cause dislocation.
“We were prepared to lose her but then, seven months after she was brain damaged, she smiled at us.”
Since then, Isla-Rose has been slowly recovering and now attends a special nursery.
She has regained 90% of her eyesight and, although she uses a wheelchair, she can stand up by herself with help.
Her mother said: “The seizures have come back now but we have an emergency plan in place when they do and she is having less big seizures, which we think is because there is less brain activity.
“But it’s still a battle. Her triggers for the seizures change. At the moment excitement is the biggest one.
“Children with Dravet have to miss out on so much, but IslaRose is an absolute fighter.”
Everyone is welcome to attend the fundraising event.