When one becomes a parent, one looks forward to those memorable stages in a child’s development: the first laugh, starting to walk, learning to talk. While these sorts of things are a given for most of us, there are children afflicted by conditions that limit these advances, restricting a child’s development.
But in some instances it’s possible to turn such a dream into reality. And that is what Reach for a Dream did last week, in conjunction with Protea Hotels, a proud member of Marriott International, a leading global hotel group, which generously donated the funds needed to change one little boy’s life in ways his parents could never have imagined possible.
Riley Austin, a 4-year-old from Durbanville in Cape Town, has been nicknamed ‘Smiley Riley’ as a reflection of his bubbly personality. He suffers from Type 1 Spinal Muscular Atrophy (SMA), a life-threatening condition in which muscles waste away because of the degeneration of nerve cells in the spinal cord.
“Since the earliest days of his life, Riley has being losing muscle function, and today he cannot talk, swallow, eat or breathe without supportive devices. The only voluntary muscle movement still remaining is to move his wrists and his pointer finger,” explains Heidi Rowley, Western Cape Branch Manager of Reach for a Dream, an organisation that encourages children to use their dreams to fight life-threatening illnesses. “As a result, Riley’s parents cannot enjoy the verbal communication between child and parent that is so meaningful in one’s relationship with one’s child,” Heidi continues.
Despite having had to cope with so much adversity from his earliest days, Riley has an intelligent mind and a spunky personality, demonstrating great attitude, courage and fight.
A portion of the R300 000 donated to the organisation by Protea Hotels earlier this year to realise children’s dreams has been used to purchase unique equipment that will allow Riley to communicate with his parents for the first time. “We are thrilled that our donation will realise such a wonderful dream for both Riley and his parents. The equipment bought with our funds will help give Riley a voice – a way of connecting with other people – and this means that he will have a level of independence previously denied to him. And that means the world!” says Nicholas Barenblatt, Group Marketing Manager of Protea Hotels.
The funds were used to acquire sophisticated technological devices, which include an eye tracker connected to a computer, a voice output aid, and a touch screen computer. “The Tobii eye tracking system is truly life changing and will open up a whole new world of communication and play for Riley – a treat for both him and his parents,“ Heidi explains. “The handover of the equipment was followed by training carried out by the supplier, geared to allow Riley to use these amazing tools with confidence and ease.”
Heidi explains that children like Riley need to be given a chance to live with hope: “For children diagnosed with life-threatening conditions, the wonder of childhood is often lost in the emotional, physical and financial strain of dealing with the illness. Reach for a Dream strives to alleviate this by creating an environment in which there can be fun, laughter and entertainment. We would most certainly not have been able to do this for Riley without the phenomenal support of Protea Hotels.”