At about eight weeks old, Iris’ family doctor noticed that she had low muscle tone and was concerned about possible seizure activity. Iris was sent to HSN and Sick Kids for further testing. There, it was discovered that Iris had a rare genetic disorder called Infantile Onset Pompe disease, which causes progressive weakness to the heart and skeletal muscles.
After six months of treatment in Toronto, Iris was able to begin receiving her weekly infusions at HSN to maintain her muscle, heart and liver function so that she could continue growing and developing at a healthy rate.
“Iris is now doing very well! She’s met her developmental milestones, and her heart function is considered normal. This is all because of her weekly enzyme replacement therapy,” says Iris’ mom, Kelsey McKechnie.
Pompe disease does not yet have a cure, but the weekly treatment Iris receives will allow her to continue growing and playing alongside her friends and family.
You can support the great work that is happening in HSN’s NEOKids programs which helps kids like Iris by making a donation at neokidsfoundation.ca