Hey friends! So if you have been following along with us this week you know Danny had his surgery Monday, it is going well, and we are doing our best to live in HOPE by continuing to move life forward, despite this pretty big bump in the road. As Danny and I drove to Baltimore Sunday night we talked about the crazy season for our CF life with some awesome blog opportunities, my plans to speak at the CF Family Day in Richmond this weekend, and the buzz about the CF movie coming out in March. As we went back and forth, the conversation trended to what we want to share with others also walking this journey. And before I knew it I asked Danny what would be the one thing he would say is hardest about this life. There were a few different reflections, but it came down to one idea – it can be really hard to make a plans when you have CF, because you have to be ready for them to fall apart and use your resources (time, energy, money) to survive.
There is no denying this truth about CF life and how the that has played out in our story. Trying to figure out where to live, our careers, a family, and the finances to help with it all…. oh and all the medical bills that comes with staying alive…. is hard and some days feels downright impossible. The balance of allowing life to be lived versus squirreling away money for the sick days that are bound to come, can be crushing – unless you find a little help. So today we are sharing one of the greatest resources that has given us the ability to still live life, even when you’re fighting to keep it: Children’s Organ Transplant Association.
This organization works with patients and their families to address the financial burdens placed on those who, due to a childhood illness, require a transplant. You may have seen the articles that have floated around the media – people who are able to survive transplant surgery will become crushed under the financial burden. For starters, Danny posted his first bill from transplant that was almost $200,000 and only covered the first 8 days and were missing things like the cost of the physicians expertise. From that first bill we would see many more from ER visits, hospital stays, specialist appointments – before you even consider the travel, lost wages, and time needed to support his health. Overwhelming does not even cover it and we had even made prudent choices in preparation for this day, such as living with family for years or two insurances. But we would never be able to cover all those bills. Thankfully from the moment transplant was forecasted for our future in 2010, so was working with the Children’s Organ Transplant Association (COTA).
COTA helped us identify a fundraising goal, assemble our team, create a webpage, plan for events, and get the word out about our need for help. Thanks to their leadership and our amazing team we raised the funds we needed very quickly and were ready financially to face not just transplant but Dan’s medical needs both before and after surgery. This week’s expenses are being covered thanks to our COTA fund. But I will tell you one of the biggest ways they have supported us has been helping us figure out how to have a life with illness. When we have questions of things we need to help manage this season of life they are always ready with a creative solution or resource to consider. If there is a question or challenge Danny and I can’t address while we are in the thick of illness they have helped our parents navigate it. But maybe most incredible of all as we have gotten to know this amazing organization and their dedicated team – they aren’t a bit concerned with how a patient comes to them. Maybe you have a strong financial foundation, maybe you have a huge group of friends ready to help…… or maybe transplant has snuck up on you and you are in desperate need or you weren’t sure you were going to even try for a transplant and now you want to consider it -COTA just wants to help. Big or small whatever they can do….. and long after your transplant is over and you are navigating “normal” life …. they keep tabs, offer ways to help, and stay connected to their COTA families. They just want to support patients and their families ….. and for those facing a medical crisis that is exactly what you need.
The name of this organization may be familiar to you or maybe you are pretty sure you have read about them from us – and you would be correct! In June Danny and I were able to travel to their Miracle Makers event and share our story. But more importantly, we want any family who could be in need due to CF or otherwise to recognize this resource as an option for them too. You may be very surprised what you learn and how they can help. In fact, some folks assume this isn’t for them because of the name – but because CF is a childhood illness we could still work with them despite Danny being 25. Others have wondered if this is a good match because the idea of fundraising around your very personal matter seems scary. Believe me, Danny is the first person to avoid being too open about personal things, especially the financial demands – but we know that COTA made it possible for us to actually return to a life post-transplant, not just to debit collectors – and we want the same for anyone else like us. If you are at all curious or want to learn more, feel free to contact us at Havealittlefaithinwe@gmail.com or check out their information page here.
Thank you so much for reading and remember to make it a great day!