Friday, April 19, 2013

National Organ & Tissue Donor Awareness Week: Meet Alexa!

April 21- 27, 2013 is Canada's National Organ & Tissue Donor Awareness Week.

We have our own experiences with being on the transplant list in 2011, but right now, in light of Donor Awareness Week, I want to introduce you to Alexa!

Alexa (age 4)  has Citrullinemia and is waiting for a liver transplant.
Alexa is 4 years old.  Isn't she adorable!?  She is on the liver transplant waiting list here in Ontario.  Similar to OTC (what my boys were affected with, and I am a carrier of), she has a urea cycle disorder called Citrullinemia. This means that her family needs to ensure she eats a very low protein diet and take specialized medicines and amino acids to ensure that ammonia toxicity does not happen.

Ammonia toxicity kills brain cells, and can result in catastrophic neurological damage.  It can also result in death, but we aren't talking about that right now!

For Alexa, getting a new liver would mean no longer having to worry about normal childhood illnesses and viruses such as colds, flu, chicken pox, etc causing permanent damage to her brain.  She has had a number of hospitalizations needing specialized medicines to bring down the ammonia levels when she contracts what would normally be mild illnesses for children.

Alexa is a Toronto Maple Leafs fan!

Alexa is from Toronto (see her Maple Leafs jersey!) I met her mom Shanna for dinner one night in the fall when I was visiting Toronto.  We talked the night away about transplant issues, urea cycle disorders, and low protein diets among other things!

In Ontario, you can sign up to be a donor by registering with Be A  Use my link here to register to support Alexa and in memory of our son Kyle.

To learn more about Alexa and her family, you can go to their blog:

1 comment:

  1. Seeing Alexa, and the way she cocks her hip, it ALWAYS makes me smile!


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