Born at North York General Hospital in Toronto on March 19, 1989 with an extremely rare metabolic disorder called galactosemia. At this time newborn screening did not exist. And although I was a healthy sized baby, after a few days of drinking breast milk, I was diagnosed with jaundice and sent to the ICU. The doctors did not know what was wrong with me and thought the chances of me surviving were very low. I was lucky enough that an amazing doctor who is now the head of pediatrics at North York General Hospital, figured out the problem and quickly put me onto soy milk.
For those that do not know, galactosemia is not an allergy to milk or an intolerance to lactose, but is a genetic deficiency in an enzyme responsible for adequate galactose degradation. There is no cure for galactosemia, but it is treated through a restricted diet. Left untreated, galactosemia can cause several severe symptoms: kidney failure, an enlarged liver, cataracts, poor growth, and physical and mental disabilities. Mortality in infants with galactosemia is about 75%.
I would just like to state that I have no medical background and no posts should be used as medical advise. Having said that, I have been living with galactosemia for 27 years and want to share this blog as an avenue to discuss food, recipes & the day to day experiences with living with galactosemia!
I would also to say that I have lived a very special life and have been blessed with great friends, family and amazing experiences. I have been fortunate enough to have many amazing travel adventures, many great relationships and have thrived in my educational and professional life. Living with galactosemia, like any illness can be a lonely battle & I hope this blog can bring you or your loved ones some comfort to know that you are not alone.
Also know that galactosemia does not have to define you.
I am a writer, an entrepreneur, a daughter, a teacher, an artist, an athlete, a cook, a student, a friend, a traveller, an aunt, a graduate and many more.
Oh and I have galactosemia.