National Organ and Tissue Donation Awareness

There are times when fate brings people into your life and gives you a glimpse of someone else’s story. We all have a story. And how amazing it is to watch the stories of others unfold before you. For me, I have the privilege and honour to know two families touched by organ donation. Two babies, that have new Hearts. New Beginnings. The Gift of Life. They have AMAZING stories.

April 17-23 is National Organ and Tissue Donation Awareness Week

In February I introduced you to Ryley and O, two little Heroes!

Today, hear Ryley’s mom Joanna, tell her story.

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A few months back, Jen had posted some information about my daughter Ryley and she’s invited me to share some more of Ryley’s story with you in support of National Organ and Tissue Donation Awareness Week which runs from April 17-23.

Ryley was born on Father’s Day 2005. We had been trying to have children for the past five years but had gone through miscarriages and infertility so her birth was the miracle we had been waiting for. As far as we knew, other than being born a few weeks early, she was healthy. When she was just over 2 months old, she started having periodic episodes of vomiting over a few days and was making this funny little noise as she breathed. After 3 days of this, my mommy instinct said we needed to have her looked at. We went to the walk-in clinic but it was full for the night. We decided to check the local ER and if it wasn’t too busy we would take her in. As fate would have it, the ER was empty. When does that ever happen?? I think that may have saved her life.

Our local hospital examined her and said they wanted to send us to the closest children’s hospital for further testing to check for things such as meningitis. We were sent by ambulance and the moment we walked in the door I knew it was bad. We were surrounded by doctors and nurses trying to get blood from my tiny little baby girl and I heard a doctor say the words…”enlarged heart”. Within the hour, a cardiologist was doing an echo on Ryley’s heart and we had the diagnosis of “dilated cardiomyopathy”. This basically means the muscle of the heart is diseased which causes it to enlarge and then it cannot pump blood effectively through the body. Your body fills with fluid and your organs start to fail.

I remember looking at the doctor when he told us the diagnosis and asking him if my baby was going to die. He assured us no, but that there was a good chance she would need a heart transplant.

Ryley 5 days after her heart transplant

After a couple of days at that hospital with no improvement, Ryley was sent by helicopter to the closest pediatric heart transplant hospital to begin the assessment for transplant. There they were able to stabilize her on a cocktail of medications and after 10 days we were able to take her home.

For the next 5 months we made weekly visits to monitor her heart failure and finally when she was 7 months, we could see that the medications were not helping to improve her heart function and she was no longer growing. We made the decision to list her and miraculously, she waited only 10 days to receive her gift of life, a new heart! And only eleven days later, she was discharged from the hospital. If it was not for the decision of Ryley’s donor family in their worst time of grief to donate their child’s organs, Ryley would not be here with us today. How can we ever say thank you enough? They are truly heroes!

This past January was Ryley’s 5 year transplant anniversary and she continues to grow and thrive with her new heart. Transplant life is not always easy. She has many tests and takes medications to suppress her immune system so she does not reject her heart. But she is alive. And through this experience, we have learned to appreciate life in a whole new way. “Life is not measured by the number of breaths we take, but by the moments that take our breath away”.

Ryley with her 4 gold medals from the Canadian Transplant Games last summer in Quebec

In the years since Ryley’s transplant, we have discovered that the problem that caused her heart problem to begin with is genetic and it has affected other members of our family that I had not met. We now have 3 family members who have died waiting for a heart transplant and my cousin, who is a mother of 4, is currently hooked up to a heart pump called an LVAD that keeps her alive while she waits for the gift of life.

Typically heart transplants last only 10-15 years so Ryley will need at least one other heart transplant in her life. All of this because we have a small spelling mistake in our genetic code. I cannot stress enough, the importance of becoming an organ donor. You can save a life with a part of you that you will no longer need. Register, talk to your family, be a hero!

For those in Ontario, go to http://www.giftoflife.on.ca/ to print off a registration form and mail it away. An online registry will be coming later this year. The registration process has changed in Ontario. A database was created based on your health card. So if you do not have the word donor on the back of your health card or you have an older style health card, you need to register. The cards that many of us carry in our wallets are a great tool but are often not available at the time your family is making the decision.

Thank you to Jen for allowing us to share our story and I hope by reading this, you will be inspired to register and share Ryley’s story with others so they can also know the importance of organ and tissue donation.

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Thank so much Joanna!
Who could not be inspired after hearing that story and seeing that gorgeous face?
Register Today to be a Hero too!

National Organ and Tissue Donation Awareness

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