Luke's Story

Images Captured By Phorever Photography

Tiny Light Luke may not be able to speak, but he knows how to make his voice and opinion heard.  There’s the “Hmm hmm” with the same tone and pitch as we would say “Thank you.”  And this five-year-old has beaten the odds to say the most important word – “Mum.”

Luke’s parents, Rachel and Nick, knew there was something different with their baby boy when he was first born.  Though he was not premature, he weighed only 3lbs 7oz.  It took months for genetic testing to be complete, and when the family got the news, it was devastating.  Luke has an extremely rare chromosome disorder called mosaic trisomy 22.  This means he has an extra chromosome 22 on some cells of his body.  Children like Luke are often small in size, have heart issues and are severely delayed.

It is now a “wait and see” approach for this family.  Luke faces at least two surgeries in the near future – he needs a feeding tube to hopefully alleviate eating issues and he awaits surgery for his tethered spinal cord.  Luke also struggles with psychological issues and needs medication to sleep.

But there is a lot of hope for this Tiny Light.  He is doing well at his special school with caring teachers who have helped him learn to trust.  Luke loves watching Barney and Pocoyo, but his favourite TV time is enjoying Star Wars with his best buddy, Daddy.  He also likes showing his muscles and going for walks.  “Keep up the fight, don’t forget to breathe, and always believe in your child’s potential.”

Written by Elaine Yong