Two RTS Angels, one on earth and one watching over us from Heaven
I think its about time that something is done. I am sick and tired of Rubinstein-Taybi Syndrome (RTS) being foreign. I am so tired of having to teach Dr's and Nurses about my son, aren't they supposed to teach us? Aren't we supposed to learn from them? I know that RTS is very rare but if you are treating someone with RTS shouldn't you make an effort?
I heard too much these past few weeks, I think I was pushed over the edge! I'm referencing the time we spent in the hospital with Bella. I was present for a few conversations with her Dr's, I was also told about many more.. Specifically a Dr's response to questions about a lung transplant. "Why can't Bella get on the list for a lung transplant?" Response - "It's my understanding that she doesn't qualify because of her Syndrome" WHAT THE HECK?? Its my understanding that you DONT UNDERSTAND! Another example would be the questioning of her medications. There are some medications that we as the families know that some of our kids can't handle. I.E. Versed , I.E. Morphine and on and on. When the questions arose the Dr's replied with "Show me the research then we will talk about it." Shouldn't they be the ones showing us the research?? The problem is that there isn't any research! I am fearful for the day that Frankie is in this position, I pray that he will never be!
We need to step up and do something. Remember the RTS Research Fund? I strongly believe that research isn't going to help us. We can't change our children, but we can change what information is available to us and the Medical community. Can we use some of the funds and future funds for Medical Documentation /Compilation? Statistics? Like what medications are questionable, how many had adverse reactions? Updated facts on Medical issues? It's so hard being in the dark, but even harder when your child is facing the fight of their life and noone knows anything about their condition.
I don't know where to start but I know that we need to! We are blessed to be the family and friends of RTS Angels, we all need to step up and make a difference for the future of our Sweeties.
We are stepping up and spreading the word, are you?