By Rosalind Russell – An Espanola family is part of a video produced by Health Sciences North, which not only focuses on the care the hospital provides but also spreads awareness about a rare childhood disease.
Iris Mae was born to Alex and Kelsey McKechnie of Espanola and at three months of age, was diagnosed with Pompe Disease, a rare, inherited disease that affects the heart and skeletal muscles because of a mutation in the gene.
Kelsey says Iris transferred to Health Sciences North after 25 weekly infusions at Sick Kids and has now done over 50 at the hospital.
She says although treatable, there is no cure and the family continues to advocate for funding research into the disease.
Kelsey adds Iris is doing well and they appreciate the support from the wider community who has assisted them in this advocacy.
The video focuses attention on the rare disease and the work carried out by the hospital’s NEOkids with the family’s experiences as the focal point.
https://hsnsudbury.ca/en/About-Us/Whats-new-at-HSN/growing-strong-iris-journey-with-pompe-disease
Photo: Iris and Kelsey McKechnie share a mom and daughter moment. The family has helped HSN NEOkids produce a video focusing on the importance of donations in researching rare children’s diseases, and advocacy for NEOKids. Photo provided by Health Sciences North.
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