The wind on his face and the birds in the air. His big sister Sophie and his loving parents, Rebecca and Brad there. These are the things 17-month-old William loves most in this world, and this will be how he is remembered long after he is gone, thanks to Sydney Children’s Hospitals Foundation Art Program’s ‘A Little Piece of Me’ project.
William isn’t your average 17-month-old. He is cuddly, caring, and courageous, but this little warrior has been through more than most have in their lifetime.
It was love at first sight when parents Rebecca and Brad welcomed their second child, William to the world. Born a healthy 3.84kg and 51cm long, Rebecca and Brad were simply ecstatic and couldn’t wait for the world to meet him.
In a matter of days this newborn bliss was brought to an end with the realisation that something wasn’t right.
“William was struggling to feed and becoming increasingly distressed. I would be trying to feed him, and he would just go rigid”, explained William’s mum, Rebecca.
Thanks to a parent’s intuition and a doctor’s keen eye, William was transported by the Newborn and paediatric Emergency Transport Service (NETS) to The Children’s Hospital at Westmead before they knew it.
“One thing was very evident, William was struggling. He was hooked up to every machine possible, and the dreaded word ‘seizure’ was thrown around.”
Rebecca and Brad’s world was turned upside down as their five-day-old baby boy was wheeled off for a number of tests.
“Epilepsy was spoken of, but confirmation was needed. Other diseases were spoken of too, and some were really confronting. You couldn’t help but think ‘why our boy’, but little did we know the worst was yet to come”, explained William’s dad, Brad.
On the 12th of February 2021, parents Brad and Rebecca received a diagnosis, the kind of diagnosis no parent would ever hope for.
“William wasn’t great, but he was doing ok, and we were preparing to head home when the genetics team called and asked to meet with us as they had some news.”
“We were ushered into a room with our doctors, the Genetics team and the Head of Genetics came to deliver the news. She told us in simple terms that William had a rare genetic disease.”
William is one of the tens of cases around the world known to have a causative variant in the gene SPTAN1. This extremely rare condition resulted in Early Infantile Epileptic Encephalopathy (EIEE), a severe form of epilepsy that presents in the first three months of life. The condition is sadly life-limiting.
This devastating diagnosis led Rebecca and Brad to get involved with the Art Program’s A Little Piece of Me project to ensure they are making the most of the precious time they have with William.
This collaborative art project between artist Andrew Christie, the Sydney Children’s Hospitals Foundation Art Program and Sydney Children’s Hospitals Network Palliative Care teams provides families with a portrait they can treasure forever.
“We don’t know how long he’s here, so if we can have a portrait that captures our happiest moments and who he is and creates a beautiful piece of art, then that’s pretty special.”
Made up of hundreds of tiny images, William’s portrait tells the story of the things that have shaped his identity, celebrating his loving mum, dedicated dad, cuddly puppy Charlie, big sister and best friend Sophie and his unique and inspiring nature.
“William has worked so hard to get to this point, and we are ever so proud of him. We don’t know what tomorrow will bring, but we will tackle it head-on and with our hearts full of love.”