Son’s precious Nativity words speak volumes
Mum’s pride as Calum is able to deliver line at school
Watching your child perform in a Nativity play is a proud moment for any parent.
However listening to son Calum deliver a line at Castleview School yesterday (Thursday) was arguably even more special for Stacey MacPherson.
Ten-year-old Calum was born with a rare genetic condition which causes severe speech difficulties, and has been nonverbal since birth.
However using an iPad and the app Proloquo2Go, the primary six pupil is now able to communicate, and enjoyed having a key role as a donkey in the school play.
“It is difficult to really have any idea how much the technology has helped,” said Stacey. “It has opened up his whole world , he can now communicate and tell people what he wants.
“It really helped him at the Nativity, and he was able to take part in the story and even deliver a line. It took pretty much everything I had not to well up in tears.”
Calum, who lives in Whins of Milton with his family, was born with the condition, a mutation of the CHAMP1 gene, and despite having communication problems since birth was not diagnosed until two years ago.
Stacey is only aware of two other children in the UK who have been diagnosed with the condition, but is convinced there are other families who may have undiagnosed children.
“I am really trying to get his story out there, and raise awareness of the condition,” she said. “There must be more children in the UK who have it, and if we can help them then that would be amazing.”
Calum is now is in the running for the Proudest Moment award which recognises the unsung heroes within families of disabled kids.
Along with his mum, dad Derek and younger brother Jack, aged two, Calum will head down to the awards ceremony in the new year, and the family have seen the boy’s confidence grow massively over the last two years.
“He can even be quite cheeky now. He has folders for school, they have helped him so much, and we can now programme people’s names into the app.”
Stacey heard about Prologue2Go, an award-winning symbol supported app which has traditionally been used for people with conditions such as autism, from a fellow parent when Calum was at the Bannockburn Riding for the Disabled centre.
Speech therapists initially doubted that Calum would be able to use the system, but he proved them wrong almost instantly and now his communication is flourishing.
“I got a trial of the app and gave it to him. Calum looked at it, selected a section under ‘what I would like to drink’ and picked ‘milk’. You should have seen the smile on his face,” said Stacey.