This two-year-old boy is incapable of walking and whenever he attempts to, his legs spasm, go completely stiff and his knees cross over.
Despite his condition, Riley Smit, from Jeffrey’s Bay, inspires his parents every day because he never ever ceases to smile no matter how hard life gets and that is how he got the nickname ‘Smiley Riley’.
“He is always smiling. When Riley isn’t smiling, then he is sick. He is a real inspiration because nothing gets in his way. He does not let his disability get the best of him,” said Fransuné Smit, Riley’s mother.
Riley, who turns three years old in October this year and is one half of twins, has been a fighter since the day that he was born prematurely at 28 weeks, weighing only 1.3kg and with pneumonia in both lungs.
He suffered a grade one brain bleed and after an MRI, damage to his brain was confirmed and he was diagnosed with spastic and dystonic cerebral palsy.
This means that he has increased muscle tone. When you intentionally walk, your brain tells your muscles which groups of muscles should decrease and increase in order for the body to complete the movement.
In Riley’s case, that part of the brain is damaged, so the brain sends the wrong message and all the muscle groups act together, making it difficult to walk.
Smit explained that this makes it impossible for Riley to walk or even attempt to walk without help. The same goes for his arms but he at least has a little bit of control over movements in his arms.
He also has no balance or reflexes to defend himself against falling or getting hurt, meaning that he needs constant supervision.
“The doctors didn’t think that he was going to make it but from the very start he was a little fighter. He is an amazing boy with an outgoing personality and loves to interact with other children. He will always find a way to join the fun. He likes music very much and tries to sing along to songs on Cocomelon,” his mother said.
She added that Riley absolutely loves motorcycles.
“We had recently bought him one of those little black plastic bikes and he is very attached to it. It has to go to bed with him. He also likes cars and then he has his teddy that he can’t sleep without.
“Playing in the garden is something that he will do all day and then he lies in the sand between the plants and plays with it.”
When asked how his condition has affected his daily life and that of his family, Smit answered that Riley doesn’t really know anything else but the life that he is living, especially since he hasn’t experienced walking and the freedom that it brings.
“You cannot miss something that you have never had. He does, however, get very frustrated when he wants to do something and his body doesn’t allow it. I think the diagnosis has been worse on us as parents because we know better. We know the world and we know what kind of life he is going to face.”
She added that everything Riley does is a challenge.
“Even though he is very spirited and does everything with a smile, it takes him double the time to get to the shower or eat or climb the stairs. He eats with his hands because he doesn’t have the control to eat with a spoon and that frustrates him.”
Smit mentioned that Riley’s twin sister, Haley, has no abnormalities or deficits and is a character on her own. The two also have an eight-year-old sister, Jordin.
“Riley and Haley would get into the same mischief and she would always be the instigator. They do have that special twin bond though and whenever I give her a sweet, she would always wait for Riley’s and give it to him herself.”
Smit said that since Riley needs weekly physiotherapy and biokinetics that are financially demanding, they are planning on having a few fund-raisers in future.
During a previous fund-raising event, a ‘sleepover jol’ at Twisters in Humansdorp, R14 000 was raised towards Riley’s cause.
She added that the support from family and the community has been phenomenal.
“The Expat Riders J-Bay have shown us what caring and support is about. We also have the support of Timion, an NPO that teaches parents with cerebral palsy children how to cope. They also make specialised equipment that cater for children like Riley. (They are) amazing people.”
