Monday, 15 April 2013

The dark side of being undiagnosed

As I mentioned in my previous post, my weekend was filled with sadness although we had a wonderful time. But there was something happening in the SN community that I could not stop thinking of. Because we are all in this together and I felt a strong solidarity and empathy with another mom who shares something with me and all of us SN bloggers.

I have been following Kate Leong's blog about her beautiful son Gavin for a long time. He is almost the same age that Sunny is, he does not speak and is undiagnosed as well. This is why I felt we were on the same team. Gavin had some kind of allergy or cold last week. Then, all of as sudden he had three cardiac arrests on Wednesday, accompanied with some seizures. He was medevaced and taken to the PICU of his regular hospital. Since then, Kate and her husband Ed have been on a rollercoaster ride until it became clear that Gavin would not make it. I cannot recount the story as graceful as Kate did. I am amazed at how beautifully she could write down what happened although her heart must be shattered into a million pieces. Please visit her blog or her Facebook page and be humbled by her strength, the love for her precious son and the way she wrote about her feelings on this most difficult and hurtful time of her life.

Kate has always been an inspiration to me. Although her life was far from easy because she had several miscarriages and lost her daughter after being 5 1/2 months pregnant she always seemed to muster her life with compassion, strength, and grace. Her son Gavin was strong-willed, determined and full of perseverance to achieve what was possible for him. He always seemed to be so at peace with himself and the world around him. To see that he passed away breaks my heart. I cannot stop reading her Facebook page, stare at the pictures on her blog and be sad. I cannot believe this happened.

Photo credits

In all of the pain they live now they made the decision to donate Gavin's organs to other children in need. Kate called this "spreading the good Karma" of Gavin, a description I really love. I am deeply humbled by their decision.

Following her updates during the last days I have been reminded once again how little we really know when our children are undiagnosed and how fragile their health is. Our kids have a higher risk for medical issues that typical kids do not have. Seeing how quickly the state of health of a SN child can change for the worse it makes having a child with an undiagnosed genetic condition more real and frightening, in a way.

My thoughts are with Kate, Ed, and Gavin's brother Brian. My heart is so heavy for them. I am sending love, prayers and light all the way across the ocean.


  1. I hadn't heard about Gavin. So so so sad, and scary and worrisome. My heart is broken for them as well and you're right that she writes about it amazingly. I do not think I could be so graceful.
    Hugs, my friend.

    1. Thanks Kristi. Hugging you tight, too.


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