Archive | February, 2016

In Honour of Rare Disease Day – Help Me Get CDG Recognized as an Official Day.

29 Feb

Today, February 29th 2016 marks the 9th International Rare Disease Day.

5 years ago I published this blog post dedicated to Rare Disease Day.

When my daughter was first diagnosed with Congenital Disorders of Glycosylation, there wasn’t a lot of information or even support for families like myself.  At the the time of her diagnosis she was the only girl in the entire world known to have her subtype. Now, thanks to the wonders of science and social media, I have been in touch with a family in the USA who has a beautiful little girl with the same subtype as my little Ladybug. Through the dedication and hard work of my CDG family, there are now CDG conferences both in North America and Europe and several Facebook groups that have become an amazing means of support for so many.

I couldn’t think of a better day to announce that the CDG families are working towards making May 16th World Congenital Disorders of Glycosylation (CDG) Awareness Day! Please sign our petition to The World Health Organization (WHO) here. 

I also encourage you to share this blog post with all of your friends and family.  You can easily share via Twitter, Facebook or email with the buttons at the bottom of this page. The more signatures we get the faster we can make this dream a reality.

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Flashback Friday – Valentines Day 2010

12 Feb

It’s crazy to think that this picture was taken just 6 short years ago – she was only 2 months old.  Ladybug was in the hospital for “Failure to Thrive”, (A common diagnosis for children who, for no known reason aren’t gaining weight.) which went side by side with not tolerating feeds.  This was her first Valentines Day in the hospital.  After her nap we ventured out of the room and handed out Valentines to the kids on her ward.

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We are praying that this Valentines Day we can keep Ladybug out of the hospital.  She is fighting bronchitis, an ear infection, and a fever that has been teetering between 38.9-39.9 C or 102-103.9 F for the past two days. We’ve just returned from the doctors and are hoping that round-the-clock Tylenol, a dosage increase of inhalers, and the addition of antibiotics will do the trick.

If there is one thing I am certain of, it is that my little Ladybug is a fighter.  It breaks my heart to see her so sick though. I just have to keep reminding myself, this too shall pass.