DETERMINED: Fiona Russo is fundraising to buy a mobi 2 to help daughter Charlie grow skills for communicating.
DETERMINED: Fiona Russo is fundraising to buy a mobi 2 to help daughter Charlie grow skills for communicating. David Nielsen

Help give Charlie the gift of speech

A CRUEL genetic disorder that impacts the nervous system causing loss of speech and body movements has forever changed the life of one little girl from Springfield.

Charlie Russo, 4, has been living with Rett Syndrome since she was less than a year old, causing her growth and development to suffer.

When the symptoms of Rett Syndrome began showing in Charlie, it terrified her mother Fiona.

"Charlie was doing all the normal things she should have been doing for a child at that age, like laughing and clapping," Mrs Russo said.

"Then all of a sudden, Charlie had become withdrawn and inattentive. She wasn't able to communicate with us, or even do the simplest task of holding an item in her hand.

"The change was so quick that we actually thought she had suffered a stroke."

Mrs Russo then began taking her daughter to doctors to find a diagnosis.

It wasn't until after a lengthy process of eliminating other diseases that doctors confirmed she was suffering from Rett Syndrome.

"The Rett Syndrome has meant Charlie is not mobile at all and uses a wheel chair. There is also a high chance that she could suffer from seizures, but thankfully she hasn't had any yet.

"It also means that she can't talk to us and tell us what she needs. Because the Rett Syndrome has affected her hands, learning sign language is out of the question for her."

But Mrs Russo is determined to help her daughter live her life to the fullest by purchasing her an electronic device which will greatly benefit her communication and day to day life.

Mrs Russo would like to purchase Charlie a Mobi 2, a speech generating device which also is an outlet for Charlie to learn and grow the skills she will need when she gets older.

"We are determined to get this for Charlie because it would be such a life changer for her," Mrs Russo said.

"The Mobi 2 looks like a normal tablet, and it has a long camera on the bottom which will triangulate Charlie's pupils so we can see what she is looking at.

"It also has functions for her to set up a screen with key words on it which she can look at, which will then tell us what she needs.

"So just like we would double click on a mouse, Charlie will learn to look at a particular word for at least three seconds and the tablet will then relay the word back to us.

"The Mobi 2 also has a range of educational games which she can play, and the software can grow with her, eventually allowing her to have a Facebook page, use a mobile phone, or complete school work online.

"This is something she could even use if she would like to go to university."

The problem is, this piece of equipment costs just over $17,000, and then there will be a the cost of sessions with a speech therapist to learn how to use it.

Mrs Russo has set up a Go Fund Me page to help raise funds towards the purchase.

To donate, go to Giving Charlie a Voice



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