Mas­sage marathon will help lit­tle Isla

Kentish Express Ashford & District - - Update - By Kristina Cur­tis

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.

Isla-Rose Sim­mons

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