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Fundraising page for Susac's syndrome sufferer Summa Barker backed by boxer James DeGale

By: Ellis Stephenson

Published: 15:59, 12 January 2019

Updated: 14:27, 13 January 2019

The family of a young mother have launched a desperate appeal to raise cash to help her get treatment for a rare condition, which left her unable to recognise her daughter.

Summa Barker, of Swale Avenue, Rushenden, is currently fighting Susac’s syndrome – a condition so rare less than 400 people have been diagnosed with it worldwide.

The neurological condition, which doctors originally mistook for multiple sclerosis (MS), can limit the functions of the brain meaning the 23-year-old has lost the use of both legs and her left arm.

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A fundraising page has been set up for Summa Barker

It can also trigger memory loss which left her not being able to recognise her one-year-old daughter, Jasmine.

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She was receiving treatment at the Kent and Canterbury Hospital until about a week ago, when the NHS pulled it due to the cost.

The health service has said it will administer intravenous immunoglobulins (IVIG) as long as she can pay the £32,500 needed to buy enough for five doses costing £6,500 each.

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Although the condition is incurable, if the right amount of IVIG is given, Summa could have a reasonable quality of life with Jasmine, now three-years-old.

Now Summa’s family, led by a group of her cousins, have sprung into action and on Friday night created a Go Fund Me page which has so far raised more than £8,000 of the £32,500 target.

The crowdfunding page has attracted support from boxer and 2008 Olympic gold medallist, James DeGale, and Reading footballer, Andrew Yiadom.

Summa's family are now trying to crowd fund money for her treatment

The mother-of-one’s cousin, Holli Godden, said: “The support we’ve had from everybody has been absolutely amazing, we’re so thankful for everybody being so generous. It means so much to us as a family.

“It’s a rare condition which is always misdiagnosed as MS and it attacks the brain, so Summa can’t hear properly and she has a very extreme case.

“They did start the treatment but then the NHS pulled it because it was too expensive.

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“We’ve been speaking to a doctor in Australia who is a specialist and they have recommended that she has five doses, which is what we’re raising the money for.”

"Summa has shown us all how brave she can be in fighting this condition" - Holli Godden

The treatment could restore her hearing and allow her to walk again.

Summa has also received a course of chemotherapy, in the hope that it might subdue the condition.

However it has left her immune system weak meaning she has contracted Tuberculosis (TB). The medication for TB cannot be taken with the traditional medicine for Susac's syndrome.

Therefore she is being forced to opt for the specialist IVIG treatment.

Holli added: “Summa has shown us all how brave she can be in fighting this condition and she has been truly amazing and makes every single member of her family proud.

“I’d like to ask anybody who can donate to head to our Go Fund Me page.”

To donate visit www.gofundme.com/support-summa039s-fight-for-life-against-susac039s

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