Erin and I have been thinking more and more about our charitable organization and we are beginning to put together some mission statements and objectives.
The first objective that we are committed to, is providing a network of support for donee children and adolescents to help them stay on their medications. It has come to our attention that the majority of children who suffer from rejected donated organs have failed to take their immunosuppressives and other medication, and thus, begin to reject their precious gifts. That is mostly parent-driven, since it is a parent’s obligation to make sure their children are taking their medications NO MATTER WHAT, but we have to recognize that some parents, unbelievably, will never be up to the task. Yes, it’s true. It’s hard to believe, but it is a fact that there are many parents who will fail in the one task they are charged with…keeping their child healthy.
I know this doesn’t surprise most of us. We see it on the news every day, and it’s heart breaking. However, it’s even more heart breaking when the child is the recipient of a donated organ. In fact, it’s downright insulting.
One of the things that stuck with me the most through this was Dr. Adam Frank thanking me for giving Piper one of my kidneys. He pointed out that I wasn’t just saving one life, but saving two lives as Piper would not need to take from the limited pool of cadaver kidneys.
When a parent who has a child who has received a kidney from the very limited pool of kidneys fails to make sure their child takes good care of that kidney (because let’s be honest, the child has no idea how lucky they are), it’s insulting to everyone who has given a kidney or whose child needs a kidney.
Therefore, we would like to provide resources for a network of donee partnerships and friendships. This would be one extra layer of help for parents who just can’t seem to stay on top of the medications, and it is 100% Erin’s idea.
Basically, each young child donee is paired up with an older donee who has “been there, done that.” The older donee mentors the younger donee and helps the younger donee stay on track with his or her medications. The older donee would also give guidance and support in other ways as needed.
The foundation would provide financial and infrastructural support to accomplish this. We would partner with hospitals that perform adolescent transplants and provide the technology to allow these partnerships and friendships to develop.
I am in the process of getting our foundation established. It’s not difficult, but a bit time consuming. We also have some other ideas we are working with, but this first one will be priority number one.
As soon as we are up and running, we will create by-laws, select a board of directors and get to work!
Stay tuned!
