April 22-28-National Organ and Tissue Donation Awareness Week
I have had the opportunity to share my daughter’s story on Jen’s blog in the past which you can read about here, But I sort of feel like that is old news so I want to share some other stories with you today. It would be nice if Ryley’s story was a rare one, but the reality is that it is not. I just want to say first that Ryley is doing fabulous! It has been seven years since she received her heart and every day we give thanks to her donor family for giving her the gift of life and the chance to live. But I know that her good health can disappear in an instant so we never take a moment for granted. An example of that is our buddy Jack.
Jack was only seven months old when he had his first liver transplant. He had a condition called biliary atresia. The liver he received has been giving him some trouble from the beginning but it has gotten him through almost 8 years. But now Jack has something that is called bleeding esophageal varices. He has to go for scopes every 6 weeks to have these internal bleeds banded to stop them and has once again been placed on the transplant list. Jack is a tough little guy who has gone through a lot in his life and we hope that someone will make the choice to once again give him the gift of life.
Another one of our friends is Bronwyn. Bronwyn is 16 years old and was diagnosed with leukemia. After going through rounds of chemo to get rid of the cancer, her heart became severely damaged. The damage was so bad, that the doctors inserted a pump into Bronwyn’s chest to work for her heart. Her family has had to relocate far from home but she cannot actually be put on the transplant list until next year because she has to be clear of cancer for a certain amount of time. Again, we hope that someone decides to give the gift of life to this beautiful young girl. We want to be able to see her graduate and someday walk down the aisle and maybe even have children. But she needs to receive a new heart to be able to do so.
There is also Charlize. Charlize is only a few weeks old but was born with a severely damaged heart. Her parents found out a couple of days before her birth that there was something wrong with her heart. This family is not new to the world of heart transplants. Her daddy already had a heart transplant 8 years ago and her big sister was also born with heart defects and almost listed for a transplant. So now Charlize’s future is also dependent on the generosity of another family to give the gift of life during their greatest time of sorrow.
Meet Sophie. She also has the heart condition Dilated Cardiomyopathy that my daughter Ryley had. Essentially it means her heart is enlarged and can’t pump blood effectively through the body. She is also being kept alive in hospital with a pump called a Berlin Heart until she can receive her gift of life. These heart pumps are a wonderful bridge to transplant but are only temporary solutions. Sophie must receive a heart to be able to go home and live her life.
Those are just some of the children that we know that are currently on the wait list. But for us, it hits closer to home than that. We found out after Ryley’s heart transplant, that her heart condition was genetic. I was able to locate my second cousin two years ago after reading an article about how she was also being kept alive by a heart pump called an LVAD (left ventricular assist device) while she waits for a heart. (You can read about that crazy story here) She has been waiting for almost 3 years. Fortunately the heart pump allows her to live at home with her 3 children and stepson while she waits. But imagine how difficult it is for her children, all under the age of 10 to worry that their mommy will die. Krystina also lost her mom in 2000 to the same heart disease because her mom did not receive a heart in time.
How do we change this?
In Ontario, you need to register your wishes to be an organ donor at beadonor.ca. There are close to 1500 people waiting for the gift of life and every 3 days someone dies on that wait list. You also need to talk to your family about your wishes because they have the final say. Get rid of that card you signed in your wallet that is often not available at the time the decision is being made. Get your health card, go to beadonor.ca and take two minutes to register. You can save up to 8 lives after you are gone and enhance the lives of up to 75 more through tissue donation. Be someone’s hero!
In Ontario: beadonor.ca
For other provinces in Canada: www.liveon.ca
For the US: donatelife.net
*Joanna is an Ontario mom to two, one girl who is alive because of a heart transplant at 7 months of age, and a boy who was adopted through the public system at 8 months of age. When not working at her job as a project manager or advocating for her children, she is a passionate volunteer for organ donation.
I’ve already registered! If I could one day give the gift of life that would make me so happy!
What a special post and what sweet children!
good to hear Amanda!
This is such an important message! This is one of those things I feel so strongly about. It is so needed, and I have put it on my drivers license, and told all my family, and on the site. I tell anyone who will listen about it. I don’t know anyone personally affected, but I just know that in those moments I won’t need the organs any more and to know someone else does, and I could help them. That to me, is not something nice to do, it’s what should be and for me must be, done.
That’s right Shari, if you aren’t using your organs anymore, why not give someone else a chance?
I just recently registered. I think many really do not know how or the importance. Glad you posted this
it’s true, a lot of people don’t give it much thought, which is why it is so important to talk about it!
i didn’t know about this awareness week thank you for sharing about it
This story made me so sad and yet so happy that I am a registered bone marrow donor and tissue donor. It is so important and a reminder that we need to talk with our family about this really important topic.
it’s a good reminder to register and keep the conversation open at home. thanks for commenting!
Oh wow! This post had me so sad — yet hopeful for support and awareness given to this and happy that I am a donor. I agree, it’s important to talk with family members about this.
it’s sad and inspiring all at the same time.
Thank you for sharing. I am registered here in BC and have told my husband and parents my wishes. Hmmmm may need to remind them.
keeping the conversation open and ongoing is really good to do. glad to hear you are registered Tennille!
I am registered – have been for quite some time! Thanks for posting this, it’s great to raise awareness. Our neighbour had a lung transplant 16 months ago, we learnt a lot more while watching him go through the process
so glad to hear you are registered Ashley, it really does open your eyes when you know someone who has been through it.
It’s wonderful to put such a spotlight on the dire need for more people to donate the gift of life. My daughter received her driver’s permit last summer. Here in the US, there is a spot on the license to mark whether or not you’re interested in becoming an organ donor. My daughter was unsure as to what she should do. Once I explained it to her and told her that I’m signed up as a donor, she decided she should do it as well. We’ve had many discussions about donations since then and have decided we’re open to donating all organs, but do not wish for our skin or bones to be removed. Hopefully, the US link you supplied will help us figure out how to put that into our records. Thanks!
Now, I would love for Bronwyn to know how much I LOVE her walker!!!! Because of having Multiple Sclerosis, I have a walker myself that is very similar to hers. The next time I have to use it, my friend and my daughter plan to bling it out with streamers and rhinestones similar to hers. 🙂
Best wishes to all on the list. I hope and pray that others steps up in their time of crisis to help out those who are in need.
so good of you Dolores to have these conversations with your daughter! The walker is pretty great, I hope you don’t need yours again any time soon, but it sure would be fun to bling it out!