Norwich woman raises money for her brother’s rare condition

India Royall (front) is holding a bake a sale at Anglia Home Improvements in Lenwade in aid of the T

India Royall (front) is holding a bake a sale at Anglia Home Improvements in Lenwade in aid of the Tuberous Sclerosis Association, a rare condition that her brother Jack Royall has. With her from left, Charlotte Websdale, Jane Fisher, Karl Tallowin, Maureen Solferino and Dinyal O'Donoughoe. Picture: Matthew Usher.

India Royall is raising money and awareness for a condition that has rocked her family.

Jack Royall, who suffers from tuberous sclerosis, celebrates with mum Ali and sister India, after be

Jack Royall, who suffers from tuberous sclerosis, celebrates with mum Ali and sister India, after being offered the treatment he needs by the drug company that makes the medicine.Picture by SIMON FINLAY. - Credit: Archant Norfolk

India's brother, Jack Royall, has tuberous sclerosis (TS), a rare disease he was diagnosed with at just 22 months old.

The condition causes tumours to grow in organs throughout the body.

India Royall, 21, from Thorpe St Andrew, organised a fundraising day for him at her workplace.

Staff at Anglia First Home Improvements - where Ms Royall is a receptionist - all got involved in the event.


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There were tables full of cakes on sale and the building was decorated with balloons and bunting.

Ms Royall said: 'There is so much here it is amazing, there are cupcakes, scones, lollipop cakes and our customers have been coming in and buying them. We have some sponsored events too.'

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Showrooms across the region are holding events for the Tuberous Sclerosis Association - as well as the Royall siblings' grandmother.

'My nanny is doing a tea and cake evening at her house too. We are doing it for my brother, he has the condition and not many people know about it, so I thought I would hold this fun day for people to learn about TS.'

During his childhood, Jack Royall had tumours in his brain, eyes, liver and kidneys and suffered frequent epileptic fits. He was told he needed his fourth bout of dangerous brain surgery.

In desperation his family was referred to Chris Kingswood, head of research for the Tuberous Sclerosis Association, and in 2010 Jack was started on a trial drug called everolimus.

His tumours shrank by 90pc, he stopped having epileptic fits and his autistic tendencies reduced.

He was able to start studying at Norwich City College.

But the family's fight did not end there as they are now battling to get the drug that has saved his life on the NHS.

Health bosses are currently refusing to pay for the treatment.

Ally Royall, Jack's mother, said: 'He is well, he is doing good, the drug he takes has changed his life - without it he wouldn't be here - but we are still fighting to try and get it.'

A letter from NHS England said that Mr Royall is not eligible for the funding for the drug.

It says there was no 'evidence that Jack Royall had an exceptional clinical ability to benefit when compared to other patients with a similar condition'.

- Have you got a news story about someone raising money for charity? Email jemma.walker@archant.co.uk

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