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Olivia's condition is so rare that few have even heard about it.

Byline: HELEN HUNT @helen_echo

A MERSEYSIDE gran is raising awareness of her granddaughter's rare medical condition.

Five-year-old Olivia has Sturge Weber, which can be so severe in some children it can cause disabilities such as paralysis and blindness.

Olivia has glaucoma in both eyes, epilepsy, weakness in her right side and a large port wine coloured birthmark on her face which is characteristic of the disorder.

Gran Jeanette Tinsley, from Bootle, asked Sainsbury's to adopt Sturge Weber UK as their charity so they can educate people about the condition and fund family networking events where sufferers, siblings and parents can meet and attend conferences. And, after she gave a presentation, bosses at Sainsbury's in Rice Lane agreed.

Delighted Jeanette, 45, who is a supported housing officer for One Vision Housing, said: "We don't get any funding from government. It's parents who run the charity who do it from their homes.

"When Olivia came into our lives we had never heard of it, nobody had, probably because it's a rare syndrome."

Jeanette said Olivia's school, Thomas Grey, has been fantastic in supporting Olivia and talking to the children about her condition.

The community where Olivia lives knows her and understands she has Sturge Weber.

But Jeanette said other people had not been so positive.

"Olivia is beautiful but because of the port wine stain some people only see that and they nudge each other and point and they can be rude. And it's not just children, adults can be rude.

"A man came up and said 'What's that on her face?' She's five. We get that all the time and that's why we want to make people aware."

Sturge Weber UK will be the store's chosen charity until July next year.


SEVERE: Olivia, five, with her gran Jeanette Tinsley
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Publication:Liverpool Echo (Liverpool, England)
Date:Aug 19, 2013
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