It's been a slow long process of researching and sending info to different organizations hoping to get the word out there about ROHHAD. I spent a lot of time collecting info and getting it out there. Many of the Moms of ROHHAD helped me out. Especially grateful to Vicki for all her research and info on her daughter Leigh Ann. Julie has been my rock and constantly giving me any info I need about her family and Mason. Reading other blogs from other families and learning about their children. EuroMom for knowing more than a million doctors I've talked to and overloading me - thank you!
It's crazy at the hospital with people who haven't worked with Haven. I've had a few people come up to me and say "Did you know your daughter's picture is on the Internet?"
Well at least it brings a chuckle to me. Yes I know she's on the Internet. It wasn't a hard choice to put her on there. So few people know about ROHHAD and the only way to get the info out there is to tell our story.
Last year I kept bogging down the NIH and sending info on ROHHAD to them. After about 3 months they emailed me back thanking me for the info and that they had researched it and have put the info on GARD.
Well tonight I randomly searched ROHHAD as I usually do and wha la...it's now on NORD!
I met with our social worker this week and she tells me "sorry, there is no assistance or organization for ROHHAD". Yes I know.
My only hope is that some day there will be an organization that will help children and families with ROHHAD. An organization that helps you because you have the illness not only when you stop breathing on your own. It's a hard disease.
My child is still able to breathe on her own - many can not. They rely on ventilators.
My child has 70% of the other symptoms of ROHHAD. So where do we go from here? You can't get assistance on "inability to feel pain" or "inability to show emotions or cry" or "inability to sleep because your mind doesn't know it's day or night" or "lack of sensation to know to go to the bathroom" or "even if you don't eat you'll gain weight".
The more people that know hopefully will help in bringing about help for our children.
Children we constantly think about with ROHHAD:
We love all of you. thank you to everyone for getting the word out there and sharing your story. It really makes us stronger in the fight!