Wednesday, June 8, 2011

Paying the price for bad genes ...

Warning: This post is a rant.

A huge part of our debt is directly related to the enormous medical expenses we incur. Our youngest son was diagnosed as a baby with a genetic disorder that translates to ongoing, lifelong medical care. It also means a whole lot of equipment, each piece which comes with a four- or five-digit price tag.

I am currently paying what I can on hospital bills that we rack up with every clinic visit. Each visit is billed at more than $1,200. We visit every three to four months. Add the occasional overnight stay ... and you get the picture. We do have insurance - good insurance by industry standards. But good insurance only goes so far. I don't even include these bills in our debt list because they are ongoing and will never be at $0 - sort of like a utility bill in my mind.

Our biggest obstacle is the equipment, much of which is deemed "not medically necessary" to the insurance company. This always sends me into a tizzy because who in their right mind would go out and buy this stuff for fun??

This summer, we are facing the biggie. It's time for a new wheelchair. He requires an extremely specialized power chair that will cost north of $30,000. It's anyone's guess what the insurance company will decide is "reasonable and customary." We are currently nearing our out-of-pocket deductible, which means we wouldn't have to pay our 20% of the "reasonable and customary." What worries me is what that number will be.

It enrages me that a suit at the insurance company five states away will make the decision as to what my kid deserves.

OK, rant over. It is what it is and we'll figure it out. We always do. On a brighter note, our debt has gone down another $1,200 and we are closing in on that $10,000 mark for the year! There probably won't be much movement in the next month because of our trips to the beach and Florida, but we're still going in the right direction.

Your support has done more for my attitude than you will know. Thank you all.



  1. Sarah, my heart goes out to you. We had a daughter that was born with birth defects. She died shortly after she was born but left us with $80,000 worth of medical bills after insurance. It took us essentially 24 years to pay for her short life. I also inherited a rare form of RA that usually kills by 55. Yippee! So my medications come to over $2000.00 a month. I fight every month to get these bills paid. I do not post about this much as it is such a downer. Medical bills are just so hard to deal with because they are not our fault and they will never go away! All I can say is fight and I am thinking about you and sending you some energy. You will be in my prayers.

  2. i know in america there is a huge debate about health care, and I won't pretend to know all the facts about your health care system but it breaks my heart to know that if he was a UK citizen (as I am) it would all be free.

    I hope that there is light at the end of the tunnel for your debt- you sound like you are doing brilliantly. I will keep you in my thoughts and hope things improve x

  3. You are a really strong person. I really hope wish and pray that things get much better for you in the future. Don't ever lose that spirit you have.

  4. gosh! keep your chin up!! We are all praying for you!

  5. I don't know where you are but my school just sent this out today:

    It's a group that works to provide mobility solutions for kids (up to 18) who need them but fall in a gap between what their insurance or government help will provide.

    I have no idea if they can help you. But it might be worth a shot to check them out. I (semi) feel your pain. I teach students with disabilities and it can be financially devastating to the parents and it seems like there are never enough resources and government programs and insurance companies always claim that some needed item isn't truly necessary.

  6. @ Kim - Few people can truly understand all that comes with a life-threatening illness. I thank you for sharing your story with me - it helps.

    Thanks to everyone for your supportive comments. We really are OK, but the frustration mounts at times and I just need to explode :)

    @ Kevin - I'll check that link out. Thanks!