I feel so inspired by Canadian doctors and their healthcare system!

I recently read an interesting post from Julie; she and her husband live in Canada and are the proud parents of three happy children. Years ago, their two sons were born without incident and are healthy but their daughter, Jessica, has had a life filled with challenges.

Jessica was diagnosed, just days after her birth, with tyrosinemia, a disease that can be fatal—especially in newborns if left untreated.

When baby Jessica was born underweight at birth, Canadian doctors weren’t initially alarmed because it’s not uncommon for children to sometimes lose weight for a variety of reasons, and even in the days following, when her parents took her for subsequent checkups, doctors weren’t concerned, but felt it was important to monitor. But after a couple more days, when Jessica wasn’t thriving, doctors ran additional tests to rule out some rare diseases. And it saved her life!

Because those Canadian doctors at a children’s hospital were following Canadian protocol, the tests showed that Jessica had tyrosinemia, a condition that attacks the kidneys and liver.

Sadly, this is just one of the happier accounts I’ve read. A life was saved because of Canadian protocol, but what about all of the little babies in the United States, where it’s left up to individual states to test for rare diseases? Babies are still needlessly dying. To me, this is criminal! How much do these tests cost? $75? $250? $500? And when you think that Tyrosinemia can be managed with treatment and lifestyle modifications, why aren’t more and more people outraged?

As Americans, what is it going to take to get our government to take the health of our babies seriously?

And now let me hear from you! Do you have a story to tell about your struggles or near-death experiences with your child who is living with a rare disease?