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£32,500 raised in 17 days for Summa Barker's Susac's syndrome treatment

A family has raised a staggering £32,500 in just 17 days to pay for a seriously-ill young mother's life-changing treatment.

Summa Barker, of Rushenden, Sheppey, has Susac's Syndrome, a rare neurological condition causing the 23-year-old to lose the use of her left arm, both legs and her hearing.

While it cannot be cured, it is hoped a treatment known as IVIG will allow her a decent quality of life with her three-year-old daughter Jasmine.

Summa with her daughter Jasmine
Summa with her daughter Jasmine

An online appeal to raise the necessary funds was set up on Friday, January 11 by her cousins after the NHS refused to pay for IVIG, deeming it too expensive.

There has been huge support for the former hairdresser's plight and the Go Fund Me page reached its target today.

Summa's delighted cousin, Maria Horner, said: "Summa has not stopped smiling all day.

"She knows that this is the way forward and her condition should improve.

"Thank you to everyone who has donated and all the hard work people have put in. We are overwhelmed, it's been amazing.

"We've contacted Summa's consultant to let him know we've raised the funds and he's going to get back to us about administering the medication and how we can purchase it."

People across Sheppey, as well as further afield, backed the appeal, including celebrities such as TV presenters Lorraine Kelly, Vernon Kay and Keith Lemon, who helped raise awareness.

Summa Barker with her family, which has been raising support for the cause
Summa Barker with her family, which has been raising support for the cause

Islanders were quick to show their support. They included Luke Blanshard who donated £1,000 from his project management company and intends to run the London Marathon in aid of Summa.

Queenborough School and Nursery held a non-school uniform day last week, raising more than £1,000 for the former hairdresser Summa.

The Bay View Pub hosted a quiz night, also on Friday, raising £415.

And £573 was raised by the Heights of Alma in Sheerness with fundraisers including a killer pool competition.

Even though they have reached their fundraising target, more events are planned to pay for vital extras such as physiotherapy sessions. They also hope to buy a wheelchair.

On Saturday, a charity car wash is to take place at The Harps, Minster Road, Minster, between 9am and 11am.

A charity football match will kick off at 1pm on Sunday, February 17, at Sheppey United's Holm Park ground, where a group of Summa's closest friends and family will play a Range Rovers team. Entry is £5 or free for under threes.

Summa Barker was diagnosed with Susac's Syndrome
Summa Barker was diagnosed with Susac's Syndrome

Maria added: "One of the biggest things is the raffle we're holding in March with the donations we've had from businesses."

The raffle, with more than 100 prizes, will be drawn at a fun day at the Co-Op Club, St George's Avenue, Sheerness, on Saturday, March 9.

Tickets are £5 a strip or £1 each from the Support Summa's Fight for Life Against Susac's page on Facebook.

Announcing the news in a Facebook post this afternoon, the family said: "Recovery and medication options all of a sudden froze because of the cost to the NHS and the lack of research and funding for this rare disease Susac's Syndrome that Summa has to live with.

"Her family stood still for a bit with that gut wrenching feeling of not being able to help. That didn’t last last long, 17 days ago, we said enough was enough.

"We must do something, Summa should not be classed as too rare to care, Summa deserves a chance just like anyone else, Summa will get this medication if it’s the last thing we do."

Summa's condition has only been diagnosed in less than 400 patients around the world and is commonly mistaken for multiple sclerosis, as the symptoms are similar.

The treatment is expected to be given in five doses, every four weeks and each treatment takes five days.

She has previously had to battle sepsis and is currently fighting tuberculosis.

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