I am very frustrated and angry and all in one totally helplessly reliant on research articles which really tell me nothing except that this whatever it is just straight out sucks. I have been looking at places for assitance - my daughter is listed with a seriously life threatening disease that could easily KILL her. But since I make more than $21,000 a year and she's not really dead yet I do not qualify. So if I make $22,000 a year with a family of 3 and only one parent work at that salary we should be good to go!
How life threatening does your child have to be to get help? Does my child need to be on a vent to get help? NOPE....because that doesn't really matter. Mason is on a vent 15 hours a day and was turned down for home nurse help because HE'S NOT ON VENT 24 HOURS A DAY! His mom works and dad is required to be with him during the day...so dad can't even work. I'm going to assume they make more than $21,000 a year so a double wammy - because honestly you can't have a family of 4 on that salary. Well, I guess we could if we all went on wellfare. I work and dad stays with Haven. So maybe we should all just quit our jobs once we find out our children are sick and could possibly live because then someone will give us assistance.
But then really what is living? Does living mean spending 75% of your childhood in a hospital, having no friends, not going to school, be stared at constantly by very rude adults who should know better. I remember riding my hot wheels and playing in the dirt and going swimming in the ocean. My daughter can't "play" --- because her breathing goes crazy and heart rate increases so high that she is worn out within 2 minutes and has to sit and sleep for a while.
We sold the Wii because she couldn't play it anymore - it made her too tired. Last night I asked her how she slept the night before. She gets mad when we ask because she says we know better than she does. So I rephrased it: How did you feel when you woke up? She sits for a minute and says: Mom, how come when I wake up in the morning I'm really tired?
A life threatening disease is more than just the disease. It's the no sleep, constant 24 hour worry, the possible infections a common cold could bring, the multiple doctor visits, the multiple doctor visits with no answers, the mulitple doctor visits that produce more questions....the fact that we have a disease no one knows anything about.
So I decided to stop researching ROHHAD and go on with the breakdown of each thing Haven has been diagnosed with to see where that gets me:
Rapid Onset Obesity
I will also keep checking in to the other areas where we originally thought Haven was headed: Pheocromocytoma
Because maybe this is where other people have started and found out something new. I am also researching under LO-CHS/HD -- because there is a lot more info there than ROHHAD in google and other listings.
Vicki - Leigh Ann's mom - has been a crucial part of my research. She has over 15 years of experience with this horrible disease. Even though Leigh Ann passed away in 1998 she has still cared for all our children and has been constantly researching as to what took her daughter from her.
My lone mom in Europe -- awesome information -- sometimes way over my head and it takes me a couple of weeks to research everything she's talking about. But she has given me things I need to question from our doctors as well.
Julie - Mason's mom - she is my backbone....she is my constant support. She even admits she lets me do the research but I get something more important - a super duper friend and someone that makes me laugh even though we're fighting this endless battle.
I just can't believe our system works the way it does and for me to get help I must quit my job or my child must be about ready to die.