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Patient Voices matter! How can we make sure that our voices are heard, so that policies are more equitable and fair, across the board. Sharing a recent Washington Post article.
Two of my children were born with a rare genetic condition that required them to get organ transplants. My youngest was 5 months old when he went into kidney failure and needed daily dialysis until he was able to get a combined liver and kidney transplant when he was 2 years old. We knew that he needed a deceased donor to save his life with two donated organs. We decided early on in our medical journey to go public with our story and share our lives with our community, using social media and the local news media. We wanted to show the real people who need transplants and educate others on the facts surrounding organ donation. We hoped that by talking about this topic and having an open, honest discussion, we could remove the taboo people often feel when talking about death and deceased donors. We hoped that if we could have these discussions with people before they ever (God Forbid) had tragedies in their own lives, they could have an honest talk with their loved ones on the impact they could have as organ and tissue donors.
Our family focus was never on praying for that phone call to come saying our child was offered an organ from a deceased donor because we knew that meant someone died and we never wished or prayed for that. We always focused our prayers on our donor spending each day living their best life and hoped they were surrounded by love. We prayed that if they did die in a way that they could be donors, that their family would support it and hope they could help families like mine.
Our story started out small but it has continued to grow and get picked up by more platforms and we have been able to reach more people. Every person has a story and every person can do something to help raise awareness and educate the public. I think the best thing we can do is to share our story with anyone who will listen and try to connect with people to get them emotionally involved which can move them to "do something" to be part of the organ transplant and donation programs.
Wow @Kouimet Prayer has been so vital during my journey. I love the way you framed your prayers to be uplifting beneficial to everyone involved. You’ve inspired me to be even more intentional in how I word my prayers. Thanks for your example!
@Kouimet - what an amazing outlook you have. Thank you for doing what you do to educate and raise awareness. I feel that It's especially difficult when children are the ones who need life-saving organs - often, the Gift has to come from other children. 😔
Take care and I wish you and the family, the very best. Sending prayers, may all of you stay blessed. 🙏