Family’s hopes for sick youngster

Fundraising at Sainsburys in ripley for Jessie Spray from Marehay who has Dravets syndrome. seen with mum Rachel and brother Thomas.
Fundraising at Sainsburys in ripley for Jessie Spray from Marehay who has Dravets syndrome. seen with mum Rachel and brother Thomas.

Darth Vader and a host of other Star Wars characters are set to provide quite a sight for shoppers on Sunday as part of a sponsored bag-pack for a girl with a rare genetic condition.

Seven-year-old Jessie Spray of Warmwells Lane, Marehay, is one of just over 90 people to be diagnosed with Dravet Syndrome in the UK.

The condition means the Alfreton Park Community Special School pupil has violent seizures and convulsions which have even led to her having to go on a life support machine seven times already in her short life.

This Sunday Sainsbury’s Ripley is hosting a day-long bag-pack for the charity Dravets Syndrome UK, “with an added edge” according to Jessie’s mum Rachel Spray - which will se members of the 99th Garrison helping out.

The Coventry-based group dress as Star Wars ‘storm troopers’ and Darth Vader himself to lend hands at various fundraising events.

Rachel said: “I just thought it would be amazing and it will certainly bring people into the store - we just thought it would be a bit different!”

Rachel says the work of Dravet Syndrome UK has been invaluable in helping Jessie.

The charity supplied the Spray family, which includes dad, Daniel and Jessie’s older brother Thomas, 12, with a vital piece of equipment which helps measure the oxygen levels in her blood.

The device would have usually cost £1,000, but now if Rachel sees Jessie’s levels dip - she has time to call an ambulance in time so medics can make sure the youngster is safe during a seizure.

“As far as I’m concerned it has saved her life,” Rachel, who also works at Sainsbury’s Ripley, said.

As well as running a night-time monitoring service and providing funds for Dravet sufferers to go on special days out, the charity also provides vital money towards researching the condition.

“It’s a life limiting condition,” Rachel said. “But there’s no cure as of yet - research needs to be done to help kids in the future.”

Dravet Syndrome is a rare form of epilepsy and the seizures come in varying forms.

Rachel’s colleagues at Sainsbury’s Ripley helped her by raising £5,100 last year for Dravet Syndrome UK - of which she is now a committee member.

But Jessie’s condition can be tough on the family.

As heat can trigger seizures, Jessie has suffered from seven seizures over the past humid fortnight.

Rachel said: “It can be very stressful and difficult.

“We have a 12-year-old son who can miss out on a lot.

“But Jessie doesn’t know any different, so she just gets on with it.

“She’s the happiest little girl you could ever meet, she’s very bouncy and adorable.

“She brings us joy every day.”

The bag pack is set to take place from 10am until 4pm on Sunday, July 28, where donations will be collected from the shoppers.

For more information ab out Dravet Syndrome UK head to its website