For those of you who are new to this website, my son has JORRP, which you can read about here, and you can read more about his story here.

Ayrie’s breathing is deteriorating.  I don’t know if it’s regrowth of the papillomas blocking his airway or a side-effect of the medicine he takes.  I don’t want to goto the local hospital where they know nothing about this disease and have them admit ayrie, run a lot of tests that don’t give them the right information and then force me to sign him out against medical orders.

So we are flying to Boston today for an emergency surgery in the afternoon. I only had twelve hours notice.  (Thank you, Dr. Hartnick, for being so accommodating!)  Cost for plane tickets? $1800. So I called agencies that help people who have to travel more than 1,000 miles for medical treatment and you know what they all told me? They need a month’s notice! Seriously? For people who have diseases that are predictable!!??  Yes, they said.  There are papers to be faxed in, signatures to collect.  I said, if I could plan around this disease I would still have a full time paying job.  If I have a job with a good salary I wouldn’t need to call you for help.  Aren’t we exactly the type of family that you are supposed to be supporting?  (ie. our lives are turned upside down by a rare disease and we have to travel to get care that helps our kids rather than harms them and we never know how we are quite going to make all of this work)

It’s ludicrous and I’m mad. This is what happens all the time.  I am told, “Oh, there are so many grants/supports for families in your situation.”  But when I actually try to access the grants/supports that are barriers that make everything inaccessible.   I feel like half of my time is spent managing the non-disease portion of this disease.

Okay.  That’s my rant for today.  Thanks for reading!

nora

(cross posted from RareDiseaseSupport.org)