Ichthyosis Awareness
We are writing on behalf of a wonderful mother and her precious son, Ethan. Ethan suffers from a rare skin disorder called Lamellar Ichthyosis. He was born with Ichthyosis and although he is a gorgeous, happy little 8 month old, Ethan suffers from increased susceptibility to bacterial and fungal infections of his skin. His mother's day is completely taken up by a continuous routine of maintenance, including applying various ointments to Ethan's skin several times a day and bleaching everything he comes in contact with. While that may seem tedious, it only begins to detail what is necessary to keep this disorder under control. To most women, this would be a grueling task that is beyond overwhelming. To this very special mommy, this is just her life and every second of it is worth it to keep her beautiful son happy and healthy.
We are writing because despite the fact that the above mentioned ointments are necessary for Ethan's health, this family's insurance company is refusing to pay for these over the counter medications that add up to over $800 a month! We are certain you agree that no child should have to suffer without necessary medications and that no parent should feel that they may not be able to provide what's necessary for the well-being of their child.
Please help us to raise awareness about this life-long disorder. One in 300,000 babies in the US is born with Ichthyosis. Our hope is not only that you become educated about Ichthyosis, but that law-makers and the American public will be as outraged as we are, that any child would be denied necessary medicine. We hope you will be able to help his family in any way possible.
From Ethan's Mother:
I am hoping that you might be able to help my son, Ethan. He is almost nine months old and has a very rare and very severe genetic skin disorder called lamellar ichthyosis. He has the happiest disposition and best outlook on life as any baby I have ever met. Each day he brings more and more joy to our lives. He has such a wonderful personality that often people do not even notice the differences in his skin. We are having a tremendous amount of trouble paying for everything that is medically necessary for him.
Our insurance and Medicaid are not paying for almost $800 a month in medical supplies for my son. And, we will probably lose Medicaid because teachers are supposed to get a very small increase in salary this year. This means we will add thousands of dollars per year to our deductible, coinsurance, and prescription co-payments. Medical expenses aren’t the only extra expenses Ethan’s ichthyosis creates. Because of the increased risk of skin infection (we’ve already battled numerous fungal infections), we must bleach everything he comes into contact with daily. Ethan’s ointments ruin his clothes after he has worn them only once or twice. They must all be 100% cotton, free of thick seams, and keep him protected from scratching.
Ethan’s ointments ruin everyone else’s clothes/furniture/carpet as well. We’ve even been told by relatives that he’s not allowed on their expensive rugs. Because Ethan cannot sweat and has problems maintaining his temperature in the cold (due to transdermal water loss), we have huge expenses in trying to maintain a constant 72-78 degree environment for him. To top it all off, Ethan’s increased skin production means he needs increased calories. He eats 2-3 times that of a “normal” person.
I am hoping that you will be able to help us convince our insurance company to cover these necessary items. Ethan will need them the rest of his life.
For more information on this disease, please visit http://www.scalyskin.org/
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