WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Monday, January 2, 2012

We cannot AFFORD Mito!!!

We have filed medical bankruptcy, moved cross country(for better insurance, for better climate or different Drs/culture), foreclosed on a home, and been a single income family. We make too much to qualify for any assistance, but don't make enough to be able to become financially stable once we pay the medical costs.

Who can afford this disease?

Supplements- I hate to say it, but I was frankly relieved that Abby could not tolerate some of the supplements. Who can afford them? Yes, some insurances will cover Coq10.. but a lot won't. I still remember taking her supplement scripts to the pharmacy and them saying, we don't fill vet prescriptions here.. Not very reassuring that they had a clue! A family could easily spend 400 a month out of pocket on supplements, and this is just for one person- many Mito families have multiple people in the family affected. So, say 3 kids and 1 parent and if you have an insurance that won't cover, or no local compound pharmacy that is 1200.00 a month!!! Add to that the headache of finding the right brand for the Mito patient- since there is little regulation on supplements the ingredients vary as does the potency.

Food- The last couple years food is more expensive for everyone. But, a lot of mito patients have very sensitive systems- most cannot tolerate MSG, dyes, preservatives... organic, fresh foods cost a lot more then canned or boxed. A box of a certain brand of coconut milk can cost 6-8 dollars. That box has about 4-6 servings. Driving to local farms to hunt down chickens that have been free range and not fed corn or soy(both allergies for Abby), marrow bones from cows that have never had hormones or medications(at this point we try anything to get safe food into her!)Even water is filtered and bottled. I suspect our food costs are double or triple that of a healthy family. Middle class doesn't have a lot of room in the budget for quality or hard to find(thus high priced)foods. We find ourselves eating more junky foods in order to make sure Abby has the foods she needs- not a healthy choice for me, but I really don't mind my junk food! Though my waist line is unhappy! LOL You may be thinking we are just over doing all this, but it is necessary- the wrong foods and Abby's gut will shutdown, or it will cause her kidneys to flare.. or increase the rate of progression of her disease.

Wheelchairs,vans,shower chairs and more-Her wheelchair was 46,000!! Thank goodness our insurance covered the majority, but we still paid 2000 out of pocket for it. Now we have to find a van to haul it, which even buying used will probably cost us around 20,000.00. We bought a shower chair, step stools, heck, we even had to buy new dinner ware because our old stoneware was too heavy for her to hold.. Even clothing is specific- she has to layer carefully to keep her body temperature steady. These aren't frivolous purchases they are must haves.. We also have to add the cost of travel. We drove to Atlanta last time- but this time we are flying. Trying to find food on the road affordably, hotels, gas. We also opted to use a high deductible insurance plan- Jan 1 means another 5000.00 to met the deductible..another 900.00 a month to pay for the insurance.

Schooling- lots of mito patients struggle with this. In Abby's case it was near impossible to send her to Public School once she hit High School- A) many Public Schools don't "believe" Mito patients and their needs. Home schooling costs money. In some states like Texas if you want their Home school to be recognized (by the public schools if you like us some years you can handle school and some you cannot)you had to use TTU or another program- that wasn't cheap(I think there are online Public schools now). So, we just put Abby in Community College- that isn't free like Public School. You may ask, why did you not fight the Public School? I don't have the energy. I think I would have had to hire an advocate and attorney to have gotten an academically and medically appropriate program through Public School- which would have consumed our energy,finances and tremendous stress-and it seemed so wrong that the Public School was going to spend your tax dollars to fight us on changes that would have cost them nothing- It was easier and cheaper to attend Community College.

Therapy- I think every specialist we see asks about PT or OT- apparently they have never seen what a private PT charges.

Keep in mind, we have another child with all of the normal family and child costs- Why don't I work? Because that would have forced Abby into daycare when she was little, and honestly, since some days she doesn't even have the energy to shower, if I am not home she won't always have the energy to eat. Who would take her to college twice a week(she isn't driving).. the Dr. appointments.. and our simple philosophy that children deserve 1 parent at home when at all possible. I am the Queen of freecycle and consignment, there is no thrift store I have not checked out.. I rarely buy anything new- we make it work. We also realized, if we put our values and family first we will never be rich, but who cares about money when your health is at stake? My husband makes reasonably good money, but even if our income doubled we would have suffered many of our past financial crisis episodes. I don't know how the families with multiple special needs handle this financial burden. We manage, but I am betting most Mito families no matter how much money they have, feel the pinch with this very high dollar disease.

No one can afford Mito.


Fitra2009 said...

Happy New Years 2012 !!!

Nice articles. I'm just blogwalking and very happy to stop here. And also give you some comment here.

Dont forget to give us some your comment into my blog too.

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