Ryley's Story

Ryley is living life to the fullest and having more experiences than most people have living into old age.

Our daughter Ryley was born in June 2005 and, other than deciding to join us a few weeks early, she appeared to be a healthy baby girl. We took Ryley to all her doctor’s visits and had the health nurse to our home and no one saw any indications that anything was wrong. But when Ryley was two months old, she started to vomit and was making a little sighing noise when she was breathing. We thought she just had a ‘bug’ but after a couple of days, we decided to have a doctor look at her. It was the evening and the walk-in clinic was full for the night. So we decided to drive to the local emergency room. If it was busy we would wait to see the doctor the next morning. The ER was empty that night and I think that may have saved Ryley’s life.

The doctor examined her, did a chest x-ray and then told us they were going to transfer us to the children’s hospital in London to do more tests. When we arrived in London, our tiny little baby was swarmed by doctors and nurses trying to examine her and get blood. Through all the commotion, I remember seeing one doctor standing in the background holding up the chest x-ray and saying “enlarged heart”. I didn’t really know what that meant, but I knew it sounded bad. A cardiologist ordered an echocardiogram on Ryley and, within an hour of arriving, we had the diagnosis of Dilated Cardiomyopathy. When the heart becomes enlarged,

it cannot effectively pump blood to the rest of your body and your other organs start to fill with fluid and shut down. With the severity of Ryley’s enlargement, it seemed a miracle she was still alive. I remember asking the doctor if this meant she was going to die. He said, “No, but she would likely be a candidate for a heart transplant”. I only remember bits and pieces of those first few days....like my daughter’s first haircut being a shaved spot on her scalp for an IV site...or the pain I felt watching her fly away by helicopter on her way to Sick Kids in Toronto for the transplant assessment. I didn’t know if she would still be alive by the time we drove there.

The next few months were a whirlwind of appointments and prayers hoping the cardiac medications might give her heart a chance to heal. But when she was 7 months old, we could see she was getting worse and we were given the choice of palliative care (making her comfortable until she passed) or listing her for transplant. The choice was clear. Miraculously, only ten days after she was listed, Ryley received her gift of life. Eleven days after that, she was discharged from the hospital and hasn’t looked back since.

This past January we celebrated Ryley’s 6th “Heart Day”. We will never be able to put into words how thankful we
are to the donor family for giving our daughter life. Ryley is living life to the fullest and having more experiences than most people have living into old age. In 2010 she participated in the Canadian Transplant Games in Quebec as the youngest participant that year and won 4 gold medals in her events. In 2011 she was part of the launch of the new on-line organ donor registry in Ontario http://beadonor.ca where we filmed a testimonial video for the site. Ryley got her “Wish” trip to Disneyland this past fall where she enjoyed a magical week as a princess. And now we are preparing for the Games this summer in Calgary.

I recently became a Parent Liaison for children under twelve for the Canadian Transplant Association in Ontario
and, as a family, we love to attend and support our local CTA events. I hope, by sharing Ryley’s story, we can not only inspire more people to become organ donors, but also help other families going through this see that there is a light at the end of the tunnel. Despite everything these children have to go through, life for them can be so very, very good!