Children’s Organ Transplant Association

I wanted to take a minute to tell you about a group called theChildren’s Organ Transplant Association. This is a charitable organization devoted to making organ transplant available to children, regardless of financial circumstances.

The estimated price tag on a small bowel transplant is approximately $1 million. We are fortunate to have very good insurance and to be pretty solid financially right now. Nevertheless, every doctor’s visit, every trip to the E.R., and every new medication comes with a co-pay. And while we have an out-of-pocket maximum, it doesn’t apply to co-pays. Right now, that’s expensive, but manageable. After transplant, we are looking at doctors visits several times a week and about 50 medications at a time.

Besides the medical bills, an out-of-state transplant center brings its own expenses. We pay for transportation and hotels every time we go for an outpatient checkup. When transplant comes, we’ll need to book a flight at the very last minute, meaning steep airfare or, even more pricey, a charter flight to get to Seattle in the required 6-8 hours. Then we’re looking at splitting our income across 2 states for about 6 months as I stay with Patrick during his recovery while Brian works here at home.

If I think too much about it, the logistics of this make my head spin.

We’re doing all we can to save while times are good right now. Unfortunately, the more we put ourselves on solid ground, the more “needs-based” programs we are disqualified for.

Enter the Children’s Organ Transplant Association. COTA, as they call themselves, is a 501(c)3 charitable organization. Their purpose is to facilitate fundraising for children needing organ transplants. Funds raised are donated to COTA in Patrick’s behalf.. meaning they are set aside to help cover Patrick’s transplant related expenses.

These funds can help cover any of the costs I mentioned above. They cover anything related to the need for transplant (meaning all the medical stuff we’re doing now both in Salt Lake and in Seattle as well as, for example, medical expenses when he’s an adult that result from being transplanted.)

We have set up a fundraising campaign in Patrick’s name with COTA. It’s being organized by some of my family members and is staffed by family and friends. 100% of what is raised will go to COTA to cover transplant-related expenses. Donations are tax-deductible and some companies will match donations. On top of that, COTA has it’s own matching and incentive programs. COTA estimates we need to raise $70,000. Funds Patrick doesn’t use, for whatever reason will benefit other children.

I’m asked all the time what more people can do to help us. Well, this campaign could use help. It’s all run by volunteers, so if you have some time or ideas, then you can be of help to us. A training/planning meeting is planned for September 1st.

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