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The Run for Raquel won't stop with us!
May 22, 2016
EVENT DATE Apr 10, 2016
Hello everyone! We are a group of five International MSc students studying at Novancia Business School in Paris, France. In April 2016, we'll be running a half-marathon in Ireland to raise awareness and support for Raquel, a Silent Angel with Rett Syndrome. We want to help Renata, a single mother of 3, by raising 5% of the cost of an eye gaze communication device, the Tobii Dynavox, for her daughter, Raquel.
Raquel is a lovely, angelic 4 1/2 year old girl. When she was born, she was perfect! She showed no signs of having any type of difficulties, delays or health issues. When she was 16 months old she began to show signs of regression. She began losing skills. Things she was able to do, and do well, suddenly she stopped doing them. One of the skills she lost, was speech. She lost the ability to talk. We want to give Raquel a VOICE. Our project goal is to raise $1,000 by the 15th of May 2016 to be used towards an eye gaze communication device for her.
Rett Syndrome is a heartbreaking and debilitating neurological disease prevalent among girls. This disorder severely affects movement, physical activity and speech. Those inflicted with Rett Syndrome may not be able to walk, move their hands or even speak, but despite their physical disabilities, they've normal brain functions. Raquel is a typical little girl trapped in a body that doesn't work for her. The AMAZING news is that research labs have been able to REVERSE Rett Syndrome by discovering the protein that controls the neurons missing in Rett Syndrome patients! This breakthrough can also be catalysts for curing other neurological disorders like Parkinson’s & Alzheimer’s. There's HOPE for RAQUEL and the thousands of girls & women who are prisoners in their own bodies. Cognitive assessment in children with Rett syndrome is extremely difficult; recent eye tracking research and detailed descriptive accounts of what girls and women are expressing spontaneously using an Augmentative and Alternative Communication (AAC) device with eye gaze technology are providing insight into their true communication and learning potential.
The Tobii Dynavox, an eye gaze communication device will allow Raquel to have a VOICE. It will assist her in excelling academically, go to a typical school, follow lessons and participate in class. But most importantly, it will give her a VOICE to state what she wants and how she feels. All in which is controlled by her eye gaze.
The Tobii Dynavox is a device that helps girls like Raquel regain some independence by combining communication modules with eye tracking technology, by giving them a voice for the first time. These devices cost around $20,000, not including the maintenance costs.
Raquel is undergoing a free 1-month trial with Tobii Dynavox. This trial collects data to be submitted to the state. If the data collected proves that she is capable of using it, the state will cover the cost of the device. Due to Rett Syndrome which causes Apraxia, she will need more than one month worth of trial to collect the data needed to prove her case. Additional months aren't free and requires from $1,700 - $2,000 per month (which later is applied towards the cost of the device "if" the data is proven in her favor). Our scope is to aid at least 5% of all these costs in order for Raquel to gain back some of her independency.
Any donation, no matter how small, will help Raquel communicate with the world around her and that is a GIFT greatly appreciated.
Her mom says: "I am her VOICE, she is my heart". Now it is time for Raquel to have her own VOICE.