WATCH | Holly (3), born with Rett Syndrome, chooses her ‘voice’ in heart-warming video.
Kim Jones (43) from Table View, Cape Town is on a mission to help her 3-year-old, ‘beautiful and lively niece’, Holly Bright, find her voice.
Edgemead residents may recognise Holly sitting in her wheelchair, with her beautiful big eyes, and glowing red hair, but what many don’t know is that she was born with Rett Syndrome, a rare genetic neurological and developmental disorder.
The condition, which affects the way the brain develops, causes a progressive loss of motor skills and speech, as well as regular seizures and breathing challenges. Holly’s case is quite severe.
“Despite having a lot to say, Holly is unable to get the words out. It breaks my heart when I see her face light up acknowledging my presence, but knowing that she can’t say hello, or worse is when you see the tears well up because she is frustrated or in pain, but can’t tell us where it hurts or how we can help.” says Kim.
To help Holly communicate, she has in the past been able to stick pictures on a velcro-covered board and then point to what she wanted to say.
While this rudimentary device showed promising results, unfortunately, Holly’s body is weak and the connection between her brain and hands is compromised, so she is often unable to use her hands to have her say.
As a solution to this obstacle, Kim set out to raise funds on BackaBuddy to purchase an electronic PCEye device that uses Eye Gaze technology, estimated to cost over R26 000. With some training, Holly’s quality of life will increase dramatically and she will have a voice in this world.
“Tammy and Nick, Holly’s parents, have devoted every spare cent they have to provide her with the best possible nutrition, therapies, and equipment to help her little body fight all it can, but this is a “luxury” not covered by any medical aid and is just beyond their savings.” – says Kim.
Thankfully, with the help of 95 generous donors, Holly’s BackaBuddy campaign has raised over R36 000, enough to purchase the PCEye device. A laptop, as well as the brackets to brace the device on Holly’s wheelchair have also kindly been donated.
Holly chooses her ‘voice’
“As a family, we are completely blown away by the tremendous support our BackaBuddy campaign has received. We couldn’t be more thankful to each and every donor who has come forward to help change Holly’s life for the better”, says Kim.
If any additional funds are raised, they will be used to cover the cost of the speech therapy and training Holly will need to use the device effectively, as well as contribute towards Holly’s monthly medical expenses (in the region of R30 000 a month), that are not covered by the family’s medical aid.
“We all do our best to give Holly what she needs to blossom in life. No kind gesture is wasted”, says Kim.
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