The Hospital for Sick Kids has been a fantastic resource, support and strength for Maya, her family and friends. Their expertise, quality care and willingness to work with the family has been such a blessing.
The fact that SickKids hospital has an actual clinic for this rare disorder speaks volumes to the knowledge and expertise found there. Even when Maya was admitted for a completely unrelated medical problem, the care she received was outstanding. Maya spent 8 days at Sick Kids in 2013 fighting bacteria in her lungs with IV atibiotics and received the best care and support. Dr. Dell, Respirologist, Jennifer Welsh, our nurse, and Melody Miki, researcher from the PCD clinic, are the most professional and supportive people anyone can find.
To watch your child go through any illness is difficult. When that illness is a chronic one that there is no cure for can be quite devastating. Maya's family is one of the lucky ones. At least they know what her illness is and have experts who are providing quality care. Maya's family and friends want to not only give back to the hospital but to advance research into this rare disorder. Funds raised through Maya's March have already been put to use in developing a database registry as well as a Quality of Life Questionnaire.
See our support letter from SickKids.
In the media:
CTV's Lifetime New method of diagnosis
CBC News: Sick Kids research helping doctors diagnose rare lung disease in infants
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