Cody Heslop

Cody lost his fight to Sanfilippo Syndrome on 26/09/21. He was just 19 years old. Cody is sadly missed by his mother Jo, father Ben and brother Jake.

On the 29th of October 2010 at 1.10pm we were told of Cody’s diagnosis of Sanfilippo Syndrome A (MPSIIIA). We cried more than I ever thought it was possible to cry. Cody was 9 years old.

We had spent years trying to find out why he hadn’t met some milestones and why some learning was being lost.  There had been a speech delay, not sleeping, behaviour problems, but because Sanfillipo Syndrome is so rare, no one picked up on it.

There was a time that our beautiful boy could ride a motor bike, ride a pushbike with no training wheels, ride a pony and go places. Cody had the most incredible ball skills, and the biggest blue eyes that smile.

We have another son Jake who was a fantastic brother to Cody and looked out for him. We made adjustments to our life, to make it happy and manageable for us all. It’s not what we ever thought would happen to us. Life is not a dress rehearsal and we made the most of each and every day.