Very sad news to share
- I know it's been awhile since anyone e-mailed, but I wanted to let
you know that my beautiful son Robert Joseph, died two weeks ago on
February 23rd. He just turned 2 on January 8th. I'm sorry that I
never made the time to e-mail more often. It just seems that the
days are so busy and they fly by. Unfortunately, we were unable to
hook up with any one great doctor. Robert had many respitory
problems and there were no doctors in our area who knew how to treat
him properly. He was doing very well until this winter. We're not
sure what was going on but he had a really bad problem with mucous.
He did not have a trach and required suctioning all the time. I'm
pretty sure that this caused continuing aspiration. He was running a
fever a week after his measels shot, but don't know if it's related.
I'm not sure what happened but one night I turned from him for a few
minutes and then when I went back to him, he was gone. I think that
he just couldn't breath anymore. His doctor signed off on the death
certificate so there was no autoposy. We had plans to see a new
pulmonologist this month, but I guess we really will never know.
I'm sorry to share this sad news. From the stories on the web site
and from some of these e-mails, we had great hope that he would do
well. He had X-linked MTM, but it was most likely not genetic.
Take care and continued good health to all of you.
Robert's Memorial Page: