On Aug. 26, John Harvey's young life came to an end after many years of combat with Battens Disease.
I still remember the phone call many years ago. My mother answered the phone, and I was sitting on the couch.
When I heard the words Battens Disease - my heart sank to my toes. Although I didn't know much about the disease at that time, I did know it was fatal.
I couldn't come to terms with what it would mean over the next few years, and as I held my daughter (who is only a year younger) I cried and I cried.
My heart went out to my cousin Natalie - who I knew would face the next years bravely, but at the same time - It would be the hardest thing she would have to do.
When John was born he learned to walk, to talk, to play and to laugh just like any other child. You would not know or suspect an underlying disease.
Like many children, he would jump into your lap to show off his toys, to be read to, to snuggle and to be tickled.
Battens took all of that away from him.
Slowly, but ever so surely, the changes started. He could no longer walk, could no longer talk, could no longer see or fend for himself.
He became bed ridden and in need of homecare support. But he still went to school, gaining friends, many he might not have known about, but they all knew him.
Right up until his passing, he knew the voices of those closest to him. You could see the sparkle in his eye when being spoke to, or having his hair played with.
He made a huge impact on many people's lives... Seeing how many visitors at his wake was proof of that.
He is no longer suffering. That part is left now to family and friends as they mourn the loss of a fighter, who persevered beyond his life expectancy.
John has taught us many things in life including just how precious it is, and that at any time it could be taken away from us.
John, I know you are up there running, laughing and playing, just as you did years ago and that leaves me with a smile.
John's funeral service is taking place today at 2 p.m. at St. Ann's Church and those in attendance are asked to wear his favourite colour: Blue.