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Cerebal palsy patient gains, then loses, her voice

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Shenaragh has cerebral palsy and has never talked to her school mates or her family

Shenaragh has cerebral palsy and has never talked to her school mates or her family

video
Tue, 16 Jun 2009 12:00a.m.
In the lively corridors of Wanganui Girls College, year nine student Shenaragh Nemani is just part of the school landscape.

Shenaragh has cerebral palsy and has never talked to her school mates or her family.

She is only able to signal yes and no using flicks of her eyes.

After 14 years without a voice a state of the art communicator, the my tobii arrived in Shenaragh's world, a Swedish made computer which uses eye tracking technology.

Infra red sensors calibrate with Shenaragh's eyes, so she can focus on words and letters and graphics and tell a visiting reporter what she likes doing at school.
 
Shanaragh has a certain kudos around the school now, the my tobii has revealed an appealing teenager.

“Now she has a voice, and now everything comes out through this computer,” says her mother Cheryl Nemani.

Everything, including her intellect.

In the past Shanaragh's teachers have not had an accurate idea of her mental ability.

For years she has sat silently in class taking everything in - maths, written language and the world around her.

She also knows how to use technology to get her way.   

“She likes to play us against each other,” says her father Sam Nemani.

“She’ll ask Cheryl a question, and if Cheryl said no, she’d wait until I come into the room and she’ll ask me a question on the computer, I’d say yes and Cheryl would come in and say ‘I just finished saying no to her’, so yeah, just little things like that.”

“Typical teenager,” says Cheryl.

Now around school, Shenaragh's wit is legendary.

“The teachers come through and talk to her and she talks back,” says head of the learning unit Bev Ward.

But the $40,000 communicator has only been on loan to Shenaragh - for a few weeks last year, in April this year, and a week now in June.

She is on a long waiting list subject to Ministry of Health funding that has recently been curbed.

Last time the my tobii had to go back, Cheryl says Shenaragh turned on the screen and spoke, “I love you my tobii.”

“The teachers got teary-eyed as soon as she spoke it. They all felt the same sadness as Shenaragh,” she says.

On Friday, Shenaragh will lose the my tobii indefinitely, and her voice.

“That’s it until we can get one funded,” says Cheryl.

As Shenaragh rolls off on her lunch break at school, you cannot help but think that the revelations of the my tobii, have not so much transformed Shenaragh – but everyone around her.

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Comments [7]

Lee
25 Jun 2009 2:23p.m.

A Givealittle page has been created for this fund - donations going to the school bank account as provided by the school.

Page link is https://www.givealittle.co.nz/member/adrian/project/helpshenaragh

Jenny & Kevin
23 Jun 2009 10:15a.m.

The Shenaragh Nemani Fundraiser 'The Magic of One Click' can be found at http://bit.ly/magic1click or www.tweettwins.wordpress.com. Donation and full background information is at that website.

A Facebook page is set up as Shenaragh Nemani Fundraiser. You can also RT @tweettwins Twitter messages to friends. Suggested tweet: The Magic of One Click Fundraising for Shenaragh NZ$40k gives her a voice Pls RT http://bit.ly/magic1click.

You can really make a difference with just one click. Please tell your friends how to find the info and ask them to spread the links and to share the wallet by donating at the school's fundraising account. The school will also set up a PayPal acocunt so international donors can easily donate.
Shenaragh's news was seen in USA, UK, Canada, NZ, Slovenia & France within two hours of launch thanks to the power of Social Media and socially conscious business connections.

The Shenaragh Nemani Fundraiser 'The Magic of One Click' is set up by business partners The Tweet Twins - Kevin Andreassend and Jenny Wilmshurst.Keep spreading the word about The Shenaragh Nemani Fundraiser 'The Magic of One Click' to help Shenaragh Nemani.



Jenny
22 Jun 2009 5:37p.m.

The Tweet Twins have created an online fundraising campaign for Shenaragh - 'The Magic of Just One Click'.

Tweet Twins blog's home page is now dedicated to explaining her need with 3 News video and an article. A Twitter campaign as well as email campaign is launched and the website. Within 4 hours the full Shenaragh message has now been viewed by NZers, as well as those in Canada and USA.

The tobii distributor is right behind our efforts. We've asked the school to set up a PayPal account in their name so international donors can make payments easily.

Spread the word, pass it on like a positive virus. This is a beat the swineflu topic change!

Please direct people to http://bit.ly/magic1click or follow us on @tweettwins on Twitter and RT our messages.

Donors can also make donations directly to the school's account
(referenced on the TV3 site and Tweettwins site). Make the deposit with the reference 'The Magic of Just One Click'.

Every bit of help you can muster is a step forward for Shenaragh and her family!

Carina
20 Jun 2009 1:07p.m.

Here is your opportunity - an account has been set up for her via her school:

Wanganui Girls’ College bank account 030791 0475781 00 with the code “Shenaragh Fund”. Any amount will make a difference!!! cf

Nick
17 Jun 2009 7:26p.m.

Please can someone setup a bank acount so all Kiwis can donate to it. To be given a voice and then have it taken away seems so cruel. It just breaks my heart. This girl needs this technology.

Colin
17 Jun 2009 8:27a.m.

It would be tragic to take away this child's voice - set it up and I'll be happy to contribute

adrian
16 Jun 2009 9:35p.m.

Why don't we raise some money for her online with givealittle.co.nz?

Just set it up and I'll throw money at it so she can keep that machine and keep in touch with everyone

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