You may wonder how and why we partnered with the Children’s Organ Transplant Association (COTA), so let me tell you!
When Eli was first listed on the pediatric transplant list, the appointments during the evaluation process included time with the transplant team social worker and financial administrator. As a social worker myself, I especially appreciated this appointment!
We learned a lot about the long and short-term financial aspects and potential challenges. We also received information about potential resources for support, including COTA. Ultimately, after meeting with a COTA representative, talking directly with the CEO (he speaks directly with each family), and getting our questions answered, we decided to move forward.
What is most important to us about COTA?
- COTA ensures funds are spent exclusively on transplant-related expenses.
- COTA serves as the administrator of funds so they are not considered income or jeopardize assistance programs.
- 100% of funds raised are available for transplant-related expenses for Kya’s and Eli’s lifetime. There are no charges or fees from the funds raised. This is important because:
- The cardiac care and transplant process is disrupting their work and education which is necessary to pay for medical care and insurance. This is especially important once they can no longer be on a parent’s insurance plan.
- Post-transplant anti-rejection medications are required for life. We anticipate the monthly cost of post-transplant medications to be near $500 with insurance. It can be $1,500-$2,500 per month without insurance.
- Long-term cardiac care is likely to include the need for a second heart transplant. The average life span of a transplanted heart at their age is 15 years.
How did we determine the fundraising goal?
The fundraising goal was set with the expectation of the longest life possible for Kya and Eli. It accounts for all necessary transplant-related care including possible complications, and multiple transplants.
What if Kya and Eli don’t need all the funds raised?
The funds raised go to COTA which helps our family AND families like ours. If we experience the worst possible outcome for Kya and/or Eli, we can adjust our fund raising goal to better reflect anticipated expenses.
What’s next?
We encourage you to spend some time exploring the COTA page, read their mission, and visit their FAQ page. We think you will be pleased with what you learn! In the future, in addition to me, Eric, Kya and Eli, you will hear from our team of friends who are helping us with our COTA campaign. They will share about opportunities to get involved.
In the mean time, we will keep you updated on all things Team Ham. Eli and Kya are wrapping up final exams this week and Eli continues to navigate the twenty or so cardiac appointments this month to complete the evaluation for the adult transplant team. Kya has some appointments sprinkled in as well. We continue to treasure your positive vibes, prayers, and encouragement!
Merry Christmas!
