Deceased 20 September 2016.
Riley was born on 1 November 2012. At five weeks old Riley started having trouble nursing, he started losing his suck and swallow reflex and abilities. When having his 8-week injections, the sister noticed that Riley did not lift his legs when having his nappy changed and he still struggled to keep his head up when being pulled up or when lying down. When, at three months old he still couldn’t lift his head up, we decided to go ahead with a series of tests to determine what might be causing Riley’s failure to thrive. After four months, Riley was barely able to drink and needed to have an NG-tube placed to meet his nutritional needs. Riley was referred to the muscle clinic at Red Cross Children’s Hospital where a blood test confirmed his diagnosis – SMA Type 1. At 7 months old he had a permanent feeding tube, a Mic-key, placed. When Riley was eight months old he went into respiratory failure and required ventilation and, after a month’s stay in hospital, was discharged with a Bipap machine to support his breathing at night. By the age of seventeen months Riley was completely dependent on his Bipap machine and required fulltime ventilation support.
Riley is unable to move or hold his head up and cannot sit, crawl, stand or walk. With the exception of his wrists and pointer finger, he is unable to move his body and limbs and cannot talk, swallow or eat on his own. Although Riley can no longer move his mouth or jaw to show off his charming smile, his eyes light up with delight when he is happy which is why he will remain in his parents hearts their precious Smiley Riley. SMA does not affect Riley’s brain and he maintains his unique personality by frowning when he disapproves of something and rolling his eyes when he simply couldn’t care less about what is happening around him…a typical toddler, doing the very best he can with a body which barely functions, while his attitude, spunk, courage and determination to continue fighting still shine bright within him.
To read more about Smiley Riley, his obsession with Mickey Mouse Clubhouse, all the wonderful activities his dedicated mom, Lisa-Jo, is passionate about having Riley experience, Riley’s little sister, Rachel, who takes such good care of him together with his adoring parents, as well as more information about SMA and the heart-wrenching struggles it brings to Riley, follow his journey on Facebook. Click here.