We have to admit 2023 has been a great year for Iris and us as a family. A few things in review

-Iris started walking around 17 months old, and skated with our support shortly after.

-In February our Fundraiser raised almost $78, 000 (Cad) for Duke University Clinical and Research Pompe Fund

-In May we hand delivered the cheque to Duke University and met an iconic expert in the field- Dr.Kishnani, who expressed great happiness about Iris’ progress, with significant attention to how Iris transitioned from bum to standing and her strength when squatting. Oh yah and some of the best news of life “I don’t think your daughter will have issues will mobility in all the years to come-because science has and is coming so far”

-Iris started daycare part-time and appears to be able to keep up with her peers.

-Iris can climb stairs and likes to jump and run, and is doing this so well she does not need to see physio for 6 Months!!!

-Iris is a huge fan of the pool, sometimes appears fearless and really working on her doggy paddle.

-The structure of Iris’ heart continues to be “normal”

-Iris continues to eat, breathe and sleep well with no complications or medical equipment support required.

-Iris now only attends Sick Kids every 3-4months.

-Iris continues to receive weekly infusions: Enzyme Replacement Therapy (ERT) in the Peds ACU at Health Sciences North in Sudbury.

-Iris port continues to work as expected with only one minor complication this year.

-Iris has developed a love for her immediate nursing staff, and a friendship with so many staff part of the Peds ACU and hospital in general 

-Iris has made friends with two other little girls who also attend the Peds ACU for a genetic disease.

-Iris can communicate a few short sentences, has a tonne of words, and repeats most words people say.

-Iris is almost potty trained and showing muscular strength and control over her

Bowel movements and urine.