First off I'd like to thank all of our family, friends and strangers we have met over the years for supporting our family and learning about our daughter. This disease affects so few but for those that it does affect it hits hard and without care.
Many over the past few years have written to me and to Haven (especially Haven) and have remained loyal to her blog and commented to her and to me through her blog. I do read all of them (even the spam stuff) but not everything is published to Haven's blog as some are personal questions that may come to me. I just want it said that ROHHAD and CANCER are very tough diseases....to have one is enough to destroy your world as you know it.
There was a comment sent to me by an anonymous person stating that one child - out of the 70 somewhat known cases has the worst case in the ENTIRE world. Now this is a blanket statement that I feel had no pertinent reason to be in the "story". Considering you do not know all of the cases in the entire world I'm not sure how you can say this to be a fact. Considering some children have 30 out of 35 of the symptoms and no doctors to help them I can't not understand how you can factualize this. And to be straight out honest......the children with the WORST CASE OF ROHHAD IN THE ENTIRE WORLD.......are the children who have died from this horrible disease.
I am grateful that our doctors for the past 3 1/2 years stopped and listened to us...many families don't have that luxury. We didn't for the first 2 years we asked for help. I am grateful that my husband and I were brave enough to try our treatments with no guarantee...some families aren't offered an option of anything except sit and wait.
Who knows if in 1 month my daughter's ROHHAD will reverse all that we worked for and she suddenly drops....or if in 5 years the chemo that we used comes back to bite us because she now has Leukemia......or if in 20 years she is still stable and having no more issues than she did at age 3. WHO KNOWS.....I would never claim my daughter has the worst case of any disease...I do not need this to exist. I would love to say my daughter is cured...and no longer has a disease. I can say my daughter has the best case of cancer possible...as for ROHHAD no one knows what tomorrow will bring....because no one knows exactly what this disease is or what it can do.
In my heart I cry every day for every child that has passed away from ROHHAD. You are the true heroes and you are our angels. Your parents are our strength because I don't know if I could be that strong.