So happy to see the article this morning in the paper and the front page! I hope that it gets some well deserved attention. Thank you for taking the time to speak with me and investing your efforts and time into this story.
There is one item that I wanted to comment on directly to you as it is not correct and wanted to clarify:
Megan Garrett, 6, wastes away from a degenerative cell disease, has daily seizures and never leaves her bed.
Reading the article and was upset at about the statement about about Megan never leaving her bed. That is not true at all. She is" bed
bound "meaning unable to leave her bed on her own and needs full assistance to do so but Megan does leave her bed and accompanies us on family outings, goes in our pool and enjoys as much time as possible out of her bed. She is unable to attend to herself for any daily activities of life and is a "full assist" patient. If she NEVER left her bed what would be the point of having her at home - that is the care she would receive in a nursing home if I did not have the level of nursing care I needed to keep her here so she has a quality of life. In a nutshell this is the reason that this is so important to our family personally.
I thought it could be misconstrued this way to others as well. I realize we covered a lot of ground in a short period of time and if it did not tie back to the reason of in home vs. nursing home I would not have even emailed about it.
Please feel free to contact me with any other questions or comments.