Until it Happens to YOU!

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The other day I was perusing the ‘EB news’ of the day and I ran across an article of a family whose insurance did not pay for bandages (shocking, I know!) and the family resorted to get their supplies from a state program for children with disabilities which picks up expenses, usually outrageous, when the family cannot afford them. When the state was taking their sweet time approving the bandages and the family ran out, they were scared and upset, and understandably so. They contacted the news station to get their help, the state got pressured to approve and within days everything was all better.  Let’s face it, until it happens to YOU, you will never quite grasp how expensive and stressful it is to have a sick child. Never.

The comments under this article were quite disconcerting, but the one that got my attention was the one that stated how the “two ‘able bodies’ parents should go to work and pay for these bandages and not rely on the taxpayers to foot the bill”.

Insert vomit sound here.

Apparently this “person” is vastly ignorant about the significant expense of bandages (thousands of dollars a month) and relies on the talking points of those who could not care less about the misfortune of others and do not bother researching what exactly this family’s needs are and what they are going through. I can’t say I am surprised. I’ve had to deal with this kind of ignorance since Nicky was born when my insurance did not pay for bandages and there was no state program that covered them either.

tumblr_m7o7r1vxvA1qcn3oqo1_500Let me explain things for those that are willing to learn more about the plight of bandages for EB patients: they are as important as Diabetes’ patients supplies and chemotherapy treatments for cancer patients. They are VITAL. It’s the only treatment available for EB wounds. Period.
Should these supplies/bandages be covered by insurance? YES!!! The reason why we purchase an Insurance Plan is so our Health Care Bills are taken care of. Families with an EB patient only have ONE treatment for their condition: cover the chronic wounds with ointments and bandages. Unfortunately these supplies are outrageously expensive, which family can afford to pay $3-10,000 a month for bandages may I ask? Who? Many families are forced to skimp on their supplies, some have to lie about their income so they can apply for social programs. No family can afford such a bill unless they are independently wealthy.  You may sign the petition if you haven’t done so already, to try to light a fire under someone’s behind to FIX THIS.

And let’s not forget that this child is not like any other child. This baby cannot just be put in daycare while the parent goes to work to earn this supposedly exorbitant amount of money to pay for bandages. If family is not nearby to help, the only two options are to either pay for a Nurse (do you know how expensive it would be to pay for a full time Nurse? Look it up!) or one of the two parents is forced to stay home, so the income is slashed in half.

How do I know all of this? Because it happened to ME. I had to quit my great job to take care of Nicky full time when he was born, and to top it off the insurance did not pay for the bandages and there were ZERO state programs in Arizona that helped me in any way, shape or form, that’s why next time I better get an insurance online from One Sure Insurance. We lost our house, our cars, I used to have to wash and reuse bandages, something highly frowned upon and extremely risky but I had no choice. None.

I know what it’s like for nobody to give a crap, because, in my case, nobody did.

But why does it take to HAPPEN TO YOU to develop the compassion to learn more about the situation, ask questions, try to come up with solutions?
Why is it perfectly OK to have this attitude to ABANDON families in need, when to no fault of their own they were unlucky enough to have a sick child? What is wrong with our society when we decide to have the attitude of  ‘it’s not my child, not my community, not my problem?’

Is it too much to ask for bandages so our children can LIVE? To some, apparently so. Shame on you.

Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.

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