Today’s blog is written by Andrew.
I wrote from the Dad perspective last year and I am doing the same this year. I will try to keep from repeating myself too much.
First I would say having Kemett is scary. I worry about him all the time. I want him to have a long, healthy, happy life. I want him to fulfill the dreams he has for himself. I want him to have friends and I don’t want him to feel different or weird.
My first job then is to keep him healthy. I believe we have been able to provide him with everything he has needed so far. It has not always been easy, but we have been very blessed to be in a place where we have not had to say “no” very often. It’s scary when the health care reform debate includes life time and yearly caps to what private insurers provide. Health care expenses are so distorted by our insurance system that paying any services without insurance becomes very expensive very fast. I also worry about the limited options of care that will be available to him as an adult. Much of the debate revolves around preexisting conditions, and if they should allow insurances to discriminate against individuals with preexisting conditions. When he’s an adult I don’t know what options are going to be there for him. If insurance can discriminate against he will most likely be forced onto Medicaid. This isn’t the worst thing, but the current budget is slashing Medicaid. It’s not just Kemett’s care, it’s all kids and adults with PWS. They all deserve access to quality care. Without it, I worry about their abilities to have Long, Healthy, Happy lives.
As for fulfilling his dreams and having friends, we are doing what we know we can do. We raise money to fund research that may one day allow Kemett to live independently, we participate in trials when we can and we attend conferences. We try to give Kemett every opportunity to be around his peers. He attends school and has frequent play dates. There are a lot of variables beyond our control but we are trying the best we can to give him the best opportunities that we can.
Kemett will likely out live us, so we will not always be able to care for him. As such you have to have a lot of faith in other people. Kemett may always need support of other people. He may not be able to live on his own or even take care of himself. We are fighting to give him an independent future, and believe it can be a reality. That is why we fundraise for The Foundation for Prader-Willi Research. That is why we spam your facebook pages every May and that is why we hold a 5K in the fall. The support we have received in doing this has been overwhelming. We cannot thank the other people in our lives enough. Thank you for donating, thank you for reading, thank you for asking questions, and thank you for liking our posts. Your support has given us lots of faith in other people. Once again Thank you!