For all the children afflicted with this disease or any disease for that matter. But since I’m living through this one it hits closer to home.
I’ve been reading a caringbridge site on two different girls,two different diseases. One with RRP like Taylor, the other a 5 year old with a rare form of cancer. The girl that has rrp is 18 years old she has had it since birth and has had over 300 surgeries. They don’t give her but a few months to live. She is strong and has been such a survivor all these years but I cry reading her page. Knowing what she is going through and not even being able to comprehend what her parents are going through. Knowing there is no cure or no treatment that works for everyone because it effects everyone different This disease can have very devastating effects. This case is not typical but it tears me up that this case even exists. I pray for her often. I worry for my own daughter about the unknown.
Taylor has a cold. For the average person so what? But for Taylor this could cause her rrp to flair and we have to watch her breathing closely. She usually becomes more hoarse during this time and of course her voice changes because her nose is all filled with muck.
In the past it has taken her about 7-10 days to get over a cold which I guess is average. But the biggest wait is once it’s cleared is her voice still hoarse. Has her breathing changed because of the cold. When she had strep this past winter it seemed to really effect her. It’s just a wait a see game.
