Mal Pais and Santa Teresa have a thriving expat community. Part of what makes this area so popular is that the local people, or Ticos, are so welcoming and friendly to foreigners. I believe that an important part of being accepted into a community like Mal Pais is giving back and helping the community when you can.
The owners of a beautiful beachfront home in Mal Pais have started a fundraiser to help raise money for their daughter Kelly. They are trying to gather funds to purchase a computer that will help their daughter communicate with them. To help boost awareness and to get the word out, the are offering a week rental at their beachfront home, The Mahogany House, for any donation over $1,500 USD. They will also throw in an ATV for the week, dinner for two at Mary’s Restaurant, and a couples massage.
To learn more about this amazing offer or to help this cause, check out https://life.indiegogo.com/fundraisers/free-kelly-s-voice-help-her-speak-with-her-eyes or contact us today.
Who is Kelly?
Kelly is our sweet, smiling, and tranquil twelve year old girl. Since the age of two she has had different diagnoses such as Epilepsy, ADHD, and Autism Spectrum Disorder. However now we have confirmed that she has Rett’s Syndrome. Kelly loves people, is extremely active and healthy, and despite being nonverbal (she doesn’t use oral speech) she uses her beautiful and intense eyes to communicate with all of us. Her favorite movie, the Little Mermaid, seems to sum up her world perfectly. The ocean, the marine animals, the music and what now seems particularly symbolic, the scene where the sea witch steals Ariel’s voice and puts in a box. It turns out Kelly’s voice is trapped inside by her Rett’s syndrome.
How is Rett’s preventing Kelly’s communication?
Rett Syndrome’s most common disability is Apraxia.
Apraxia is the inability to carry out a cognitive intent – Kelly intends to move a particular way, but the neurological signal doesn’t reliably get to the
right muscles to move them consistently. This profoundly affects the ability to speak or use precise hand gestures to communicate. So even though Kelly understands most of what we say to her (in Spanish and English!) she has no way to respond. But now we think we have found the answer, Kelly’s voice can finally speak out loud.
We have shown absolute dedication to her education all her life, but we need a little extra help to acquire this life changing tool for Kelly to move in the direction of independent communication and beyond, an AAC.
What’s an AAC ? How will it let Kelly speak out loud using her eyes?
Augmentative and alternative communication (AAC) .
People with severe speech or language problems rely on AAC to supplement existing speech or replace speech that just isn’t there. Think Stephen Hawlking.
The AAC we are looking at is a “Tobii”. A speech generating device controlled by eye gaze through an eye-tracker, giving Kelly her voice through the use of her eyes. Not only will she finally be able to share her thoughts and needs, with an audible voice there is no limit to what she can then do!!!
Here is a YouTube video to illustrate how incredible it is to give a Rett’s child, like Kelly, a voice with a similar device: http://youtu.be/R_1U4JmaYB8
What Kelly needs now is YOUR HELP!
Help us buy this Tobii eye gaze computer for Kelly. Some of you know Kelly, and even if you don’t we all know how crucial comunicacion is to growing children, to everybody! Everyone needs to be free to express themselves somehow. You can only imagine the frustration of understanding everything people are saying and being trapped in this body that doesn’t let you speak.
Because of it’s incredibly high-tech design and eye-tracking capacity, the Tobii computer is expensive. So every little bit helps. Of course if you know how important this tool can be for Kelly and want to donate more please do! All that matters is that we help Kelly speak!! Thank you for taking the time to read about Kelly, and thank you in advance for any donation you make!