EYE GAZE FOR PAIGE TO COMMUNIC
My Daughter Paige, is a 4 year old little girl with Cerebral Palsy; a condition that affects the brain, resulting in a wide variety of disabilities.
In Paige’s case, she is unable to sit unsupported, we are advised that she will never walk and she cannot talk although goes to Speech Therapy, she cannot feed herself or perform any activities that an average 4 year old should be able to do. Nonetheless she is a very happy, beautiful and determined little girl that brings joy to everyone who has any encounter with her.
As her Father I can only do my best to make her life Happy and keep her as Healthy as possible. I am a Divorced Father and I do not financially have the means to support her fully, I have been unemployed for 9 months whereby my Girlfriend and her children have been supporting Paige and I during this time in any way possible. I have only now obtained a 3 month probationary job with minimal pay and though she lives with her mom full time and I see her rotating weekends (as I had to give up my weekday sleep over visitation to be at work and earn some money to get back on my feet again and be able to be fully supporting again), I want to contribute so much more than I currently can, to my little girls life overall, but have been struggling and limited in doing so at this point in time.
My Daughter Paige currently undergoes Physio, Occupational Therapy and Speech Therapy in the hopes of optimizing her functioning and trying to get her more mobile on her own and to play a bit and with much hope to be able to communicate in some way so that all can understand her needs and wants.
Her Medical aid does not cover everything she needs and whilst her there are now people raising funds for her wheelchair costs (In excess of R 21,000) which is in needs to as this is custom made designed to specifically support Paige’s little body and hold her up and prevent further back and hip issues which she has already had many operations for and splints (Approximately R 15,000) which need to be re-made whenever her feet grow and a Gait trainer (In excess of R 80,000) which is of course extremely pricey and more money most people have on average.
I am looking to raise money for the Eye Gaze Technology which her speech Therapist has advised me will be the best alternative for Paige currently to communicate with us.
Eye Gaze Technology or eye tracking is a way of accessing your computer or communication aid using a mouse that you control with your eyes. The Tobii systems follow your eyes with amazing accuracy to see where you are looking on the screen.
Eye tracking technology is a way for those with CP to control a communication device or an adapted computer with just their eyes. … With eye-gaze technology, users operate a computer by directing the cursor with their eyes: Look at a screen icon, linger, blink, and you’ve just told the computer or device what to do.
There are various Apps on the Eye gaze technology from meal selection, to letters of the alphabet making sentences, and so much more. It was said to us by Paiges speech therapist, that a child has before completed their Matric exam using this technology and App’s may be added on over time.
The sooner we have this technology, the sooner Paige can communicate with all those around her from Family, Friends, School Teachers and much more.
Having a Daughter who is unable to communicate her Fears and Desires, her heart break or when she could be hurt mentally, emotionally, physically is very difficult as you always want to as a Dad be in a position to protect your child from any form of emotional hurt or pain of any sort.
Paige was not born this way, it was the result of a severe infection she acquired after an operation she underwent at 3 months old to correct a birth defect called ‘Oesophageal Atresia’;
This is where the Oesophagus (Food Pipe) is not connected to the stomach which means the Baby cannot feed unless the defect is corrected surgically.
As a result of this, at 1 Day old, with Paige weighing 1,6Kg’s, she had her very First Operation which was unsuccessful, she therefore remained in Neonatal ICU until she was strong enough for the second operation, which unfortunately caused her to become septic. Paige’s heart stopped multiple times and she could not breathe on her own. This caused a lack of oxygen to her brain which ultimately caused her “brain damage” in the form of cerebral palsy.
We were asked to bring the family in to see her for the first time and to all say our Goodbye’s. (This moment I have never forgotten and Never want to experience again, or never would I wish this on any worst enemy).
Subsequently, she has undergone a further operation for reflux at 8 months old, been to theatre 3 times for botox into her muscles to relax them (cerebral palsy causes the muscles to be tight and stiff and not as mobile or flexible as the average person), she had a major hip operation 18 months ago and just recently in March she had a massive tummy operation to correct a complication of the previous operations.
My Daughter Paige is the strongest and most determined little girl I have ever known and I only want the very Best care for her. Please help me to raise some of these funds in order to get my child the equipment she needs to progress and live a closer to normal life so that she will feel part of society and make friends, communicate and live the best life she possibly can.
Paige surpasses all our expectations and I cannot wait to see her progress with having the technology she requires. I want her to be able to tell me when she has an itch that needs to be scratched, or that her feelings were hurt that day, or what she feels like eating, as opposed to us deciding these things for her. She deserves as much choice as we all freely have.
Thank you so much for reading our story and I hope we can do this together.
Please help me to help my Daughter Paige.
Have a fantastic Day
Jonathan (Father of Paigey)