Thursday, 30 May 2013

Galactosemia: It's part of our lives & we are winning.

When Molly was 4 (yes 4) days old I received a phone call that changed our lives forever. 

Sick Kids Hospital in Toronto called to tell me that Molly had tested positive for a condition that they test all babies for at birth.

"How is your daughter?!" the nurse nervously asked me from the other end of the phone.  Me, having been a parent for all of three seconds replied "umm..fine...I think?"  I don't remember much of the conversation as it is such a blur, but essentially she told me to bring Molly into the hospital right away, NOT to Google anything and not to panic.  GREAT. PANICKING!

Thankfully, at the time we lived literally 5 subways stations away from Sick Kids so I think I arrived at the nurses office about 30 seconds after I hung up the phone.  Of course my Mom who had helped me for the first couple of days had returned home and my workaholic husband had just started a new job so I was on my own.  Pull yourself together.  It can't be that bad right?

Galactosemia is a rare genetic metabolic disorder (don't I sound so intelligent?) which basically means Molly is missing the gene required to process Galactose.  Which is found in pretty much every food imaginable.  Your body also makes Galactose.  Wonderful.   The four dangerous words we learnt to watch out for in ingredient lists were Lactose, Galactose, Casein and Whey.  As well as the obvious milk ingredients.  Let me just tell you that there is dairy in way more than you think. Modified milk ingredients are in EVERYTHING.  At one time it was even in McDonalds fries (but they have since upped their game and their fries are now dairy free).   On top of dairy she is required to limit the amounts of other fruits and vegetables that are high in Galactose such as tomatoes, soy etc. etc. etc.  The list goes on.
Now I was raised on dairy.  My brother alone can drink three liters of milk in one sitting.  My entire family LOVES yoghurt, and entertaining and special occasions always involved stinky French and blue cheeses.  So this diagnosis was a bit of a game changer.

All I knew at the time was that I couldn't breast feed anymore.  That my breast milk was killing Molly.

I remember the genetic Doctor asking me if there was any chance that Molly's Dad and I were related.  I almost choked on my tea.  Molly's Dad was born and raised in Zimbabwe and never left Africa until after he and I were married.  (Yes that is a WHOLE other story that I will have to tell you about another time.) His skin is as dark as you can get, and I am well, you can see from my photo that I am blonde and fair. (Well, not naturally blonde, but you get the idea.) We have completely opposite skin colors.
 No, there is no way we are related.  But it did give us some much needed comedic relief at the time.

I can not say enough things about how angelic the staff at Sick Kids Hospital in Toronto are.  If you can afford it, please donate to them. - And if you ever find yourself having to go there, I highly recommend the Delta Chelsea hotel.  This place rocks for kids and is literally a block away from Sick Kids.  The Delta Chelsea has a kids pool complete with an indoor/outdoor water slide and a kids play room that rivals any day care center I've ever seen.  It even has two LIVE rabbits running around the place.  I believe they offer a discounted rate for guests who are staying with them in order to attend a medical appointment.

I won't go into too many details, But what I will say is that when you spend as much time in a children's hospital as we have (and there are many families that spend much more time than we do) you DEFINITELY start to count your blessings.  Molly's condition of Classic Galactosemia is rare, but completely manageable and controlled by diet.  With Galactosemia there is the potential for motor and speech delays, learning disabilities, ovarian and liver failure and cataracts. - among other things. We were advised that since Molly was diagnosed early, she may very well develop normally and live a long healthy life without any complications.

So yes, Molly has endured WAY more needle pricks than any four year old should, and yes, Molly will miss out on a few things along the way like birthday cake (other people's birthday cake, of course we make cake that she can have at home), Ice cream, Pizza etc.  But 'dairy free' is so easy to find these days that we are discovering new safe foods every day.  The plus side to all of this is that her diet is ridiculously healthy.  She actually ASKED for kale while we were in the grocery store the other day.

I might even have to post about our favorite dairy free things!  And Molly never ceases to amaze me when she sweetly looks up and asks the person offering her food if there is "any dairy in there?"

It has been almost 4 years to the day that I received that life changing phone call.  Molly's birthday is in three days, and every time I prepare for her birthday I am reminded of the roller coaster ride that the first weeks of her life were.  I am reminded how LUCKY I am to have a healthy child. Most of all I am reminded to not sweat the small stuff, cuddle her a bit more often and be thankful.  For everything.

 If you met Molly you would have do idea she has this disorder.  She is tall, beautiful, energetic and smart. Most importantly she is HEALTHY and HAPPY.

 If you are a family who has just been diagnosed with Galactosemia (or any other childhood disorder for that matter), PLEASE comment below with your email address.  I would love to chat.

Us.  (Photo taken by the Amazing Ash Naylor)


  1. Hi! I found your blog from I received that life-changing phone call from the genetisist 4 days ago. Two days ago it was confirmed that he has CG. We saw no signs of the disease. I had been breastfeeding since his birth with no vomiting or jaundice...nothing. It has been hard to process as he seems so happy and content. My husband and I have been googling ever since trying to understand what we are up against. Would love to hear from you and get advice/reassurance that our son will be able to live a happy and healthy Looking forward to hearing from you!!!

    1. I can't tell you how happy I am that you reached out to me Jaclyn! I am emailing you now. xx

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  3. Thank you for your post on my babycentre post. Your blog reiterates excactly how I was feeling last month. I hope we can keep in touch! my e-mail is