I can't handle the pain and suffering from families and having no where to turn because no one knows about us. We don't have an organization or a foundation to turn to. I feel I must try to find a way to begin a non-profit organization or a foundation to help our families. I know MANY ROHHAD families now and have talked to quite a few mom's. Desperate to save their child and not even understand what they are trying to save them from.
NO CURE - NO TREATMENT - NO HELP
Many of us spend the first year being told by doctors that what ever it is it is the fault of the parents. We lose this time trying to diagnose our child and we lose key areas needed for our child to function.
Shelby lived in Arizona....she is 7 years old. She traveled to California in hopes of help and was diagnosed with ROHHAD but the doctors didn't know anything. Now they have moved to Illinois in hope of something with Dr. Weese-Mayer and her team. Shelby's insurance is almost out and they have no where left to turn.
Nikki spent almost an entire year in the hospital away from her family.
Sophia has had pneumonia 5 times this year and more and more symptoms are popping up and the family is left defensless against stopping her from slowly getting worse.
Mason is testing medication in hopes of helping him be able to breathe on his own again
Haven has spent two years trying different chemos in hopes of stopping the disease and offering hope for other families
Josh is living with a vent and pacer to help him breathe and lead a normal life
Denika is has been forced to leave her home to stay in a hospital away from her family in hopes of saving her
Noreen is constantly fighting infections and her condition worsens as time goes on
There are more families than even listed above. We only have 40 - 50 of us in the ENTIRE world. How do you get anyone to listen to a such a small group?
Are we supposed to sit here and let our children slip away because no one knows about our disease. Everytime I go to bed at night I stress that Haven may not wake up in the morning. I don't want her sleep walking to stop - if I can hear her screaming or talking or walking around I at least know she's breathing.
I'm asking for help from anyone who may know how to start an organization that can help our children. Should I have a web site created? Should I have a forum? Do I need an attorney that I can't afford because I just spent $2,300 on medical expenses from the past few months?
There are two more girls about to go on a trach/vent to breathe....age 5 and 7.........where do we go?