Sunday, January 4, 2009


If you read my 1st blog post you read about my niece and her battle with a genetic disorder called EB. EB totally sucks, and that is an understatement. If you can handle graphic photos google epidermolysis bullosa, if not just look at my previous post and don't watch the video.

So, my sweet niece not only has to battle this horrific disorder, that has NO cure, for her entire life. But she has to endure extreme daily pain and open wounds, wounds that if you and I had would put us in the hospital for weeks. Not only does she have the pain and wounds, she often has to endure secondary problems ALL the time.

Currently she is in the Children's Hospital in Cincinnati, OH. She had been sleeping a lot since Christmas, then last week she just wasn't herself, she wasn't eating, was still sleeping a lot and wouldn't take her pacifier, they took her to the hospital to have her checked out. That was last Tuesday and she is still there. At first they thought she had Osteomyelitis which is a painful infection of the bones, but they did a bone scan and that wasn't it. They now know she has an infection of the blood, which is better because she won't be on antibiotics for 6-8 weeks, just 2, but bad because an infection of the blood is much more dangerous since it can spread to your organs faster. Luckily they have found an antibiotic that is working on the infection, so they think.

But on top of the infection, they couldn't find a vein to put in a pic line (kind of a more permanent iv), so they had to surgically put in the pic line, in her chest. AND she had a blood transfusion yesterday because her hemoglobin count was too low. YEESH, can't a baby get a break?!? Seriously, how much can one baby endure, how much can one baby take. My heart breaks for this sweet baby, why, why, why should a 7 month old baby have to put up with such pain and suffering. And why should 2 parents, new parents who adore their baby, and only want the best for their child, have to watch their child suffer? Why should her 2 parents have to endure the pain of watching their child in pain. Really, it is not fair, and I know life is not fair, but for crying out loud, why should it be this unfair, for a baby?

For most parents we live for playing with and enjoying our babies. We bounce them and swing them around, we tickle and rough house, but most of that cannot be done with my niece because of the pain of her skin. We cherish the moments of playing with our babies and enjoy it on a daily if not hourly basis, but with my niece, her parents may only get to experience that enjoyment once a week, maybe even for only an hour. Seriously, I know my brother and sister in law are doing amazing with her and love her to pieces, but it truly is NOT FAIR.

So I plead with my few readers, if you know anyone in the medical field or feel like being an advocate let's start building awareness about this horrible disorder. Just start talking about it, share with people about this. Blog about it, send emails about, whatever it takes. It's time that the children affected by this start seeing remedies and maybe someday a cure. No child should have to endure this much pain, ever, for whatever reason. If you do nothing else, pray for her.

To my brother and sister in law, I give you major props, you are truly amazing. Even though your sweet girl has this, God knew to give her to you, he knew you guys would be awesome as her parents, knew that as painful as it is, you had the strength to endure caring for her. Hang in there, you are doing great, we pray for you guys everyday. Much Love.

1 comment:

AddictedToCoupons said...

Hello - I stumbled upon your blog from an EB alert I get, and I def agree, EB sucks. I have a nephew with RDEB and know it's challenges and how terrible this disease is. The Cincinnati Childrens Hosp is great and has one of the few EB clinics in the country. As you mentioned, awareness and fundraising/research are the key and we've organized an annual event to help with the research - over $20K the first year! Good luck with your efforts and best of luck to your adorable niece and here's to praying/hoping for a cure SOON!