Friday, January 13, 2012

Is the quality of my son's life less?

We have been quiet on the blog front and I promise an everyday life update, but first this is something I never would have thought of could possibly happen. And I am angry.

We will be the first to admit when we welcomed Leo into our family, we did not think through all of the possible worst case scenarios. We knew it was God's will for Leo to become a part of our family. Even if we did take time to consider all of the different scenarios, I don't believe either of us would have thought of this one. This little girl has the same syndrome as Leo. This could be Leo. As far as we know Leo's kidney's are functioning properly but we have other issues. We are still waiting to hear from the cardiologist regarding Leo's heart monitor test.

I can not believe that this little girl is being denied a transplant. The part that really makes me angry is that her parents do not want her placed on a transplant list- they are willing to donate a kidney themselves or find a donor in their family and circle of friends. The only thing CHOP has to provide is the surgeon and follow-up care. She is being denied a transplant because she is mentally retarded.

None of us can predict the future. It is in God's hands. Since when do doctor's get to determine quality of life. Leo is developmentally delayed, he apparently has a syndrome which could cause him to not get certain kinds of medical care in the future. Leo is a child of God. He is my son. I pray we never have to cross this bridge, but if we do- you can be sure of this- we will fight.

I will be following up with this family to see who we need to contact to help them in their fight for their daughter's life.


  1. Is this common practice? It's horrible. I have never heard of this happening. Outrageous.

    1. Melissa this happens more then everyone realizes! Quite sad and scary considering we live in 2012 in the USA!