One of the most frustrating parts of having a child with EB is that I often felt as if I was abandoned. Not only abandoned because I had nobody to help me with his extreme needs, but abandoned by society in general. So much is available for families that have children with more common conditions, but I always felt EB felt through the cracks due to the rarity of the disorder.

This excerpt from my upcoming book ‘Butterfly Child‘, due out in late 2014, speaks to this sentiment…

     One of the other EB moms I knew called me one day to ask me a question I never once thought of: “Did your Insurance, Social Services or any other organization or entity come to the hospital when I had Nicky offering me services or anything to help me take care of Nicky?” The answer was, of course, “No”. She hadn’t either when she had her son, and the reason why she was asking me was because her neighbor had just had a baby with Down Syndrome and the amount of organizations, social services and the like visiting her at the hospital offering her their services stunned her. I was stunned as well. I had nobody coming to explain anything to me at the hospital when Nicky was born, nobody came to visit, no concern given, no organization sent me a ‘welcome home’ basket with supplies or resources or anything. We were left to deal with it all alone.

It is unfair that medical coverage, treatment and services for EB are not automatically given, nor reasonably accessed. When a patient is diagnosed with cancer, chemotherapy is automatically given as a form of treatment, and with diabetes, supplies are automatically covered. EB isn’t a condition that has an expiration date; care of the patient is constant and needed without exceptions. Bandages should automatically be supplied upon diagnose. Unfortunately that was not the case for us and others, so many families in the richest country in the world could not get insurance groups to cover bandages, which are just as important as chemotherapy for cancer patients or supplies for diabetics. There should never be a question of coverage, for any treatment that is medically necessary, no child should suffer, and if our children must suffer than the very least that should happen is proper treatment and care, regardless of our financial situation. EB is extremely expensive and supplies, access to doctors that can provide the proper services, regardless of their location, and medications that are needs, not mere wants, should be covered without question. 

someecardseb3It is such a shame that these children with this horrible condition and their families must fight for anything and everything to simply keep their child alive. Mind you, we want nothing else, but keep these children ALIVE. I made it no secret to anyone that would listen that Insurance companies denied Nicky’s bandages for the first 12 years of his life. When Nicky was only one I had to declare bankruptcy. Until we moved to California when Nicky was 4 (at which point CCS-California Children Services picked up the tab), we survived by changing bandages less often that we should have, simply because we could not afford them. Thankfully I had other parents who sent me their overstock and twice parents of children who passed away sent me their entire loot. Even so, I had to wash and re-use bandages over and over again, even rewashing and sterilizing bandages doctors didn’t want me to reuse. I had no choice.

Since Nicky was 12, National Rehab somehow got the insurance to cover bandages. I don’t know how they do it and I am not questioning it. I am and will always be in the “fear of running out” mode. It is what it is. This is probably the reason why I have been such an avid advocate for EB Awareness, to open some eyes, to open some hearts, to open the discussion of how these children are tortured by Insurance companies. When will our society learn that these children are not a burden or a problem but a gift?

Happy Thanksgiving everyone and many blessings for a wonderful holiday season.

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