Our search for a diagnosis

It's very humbling to have to do this and pride has stopped either of us from reaching out. Many of you have followed along with us on our journey which from day 1 has been nothing short of devastatingly difficult. Our beautiful baby girls were born at 26 weeks and have faced nothing but obstacles along the way. 1 in particular Arianna has had a really hard life with hit after hit. She is just a little over 16 months now and has spent most of her little life in and out of hospitals for months at a time. She was born with cardiac problems, and adrenaline insufficiency and most importantly a separation between her intestines/ stomach/ colon. She has had approximately 7 operations in the last year and a half to deal with the repercussions of this and everyone has left her in worse off condition. We have seen every type of specialist, done hundreds of test some of which are very very invasive and they just can't figure out why she won't heal. Her body rejects everything and no Dr can figure out why. We finally were able to bring her home from her recent stay a day and a half ago but unfortunately she couldn't tolerate it and we are back. Once we have her stable enough our only option is to go see a specialist in Ohio for rare diseases in which we would have to drive there every 6 to 8 weeks to follow up with. To be honest I feel selfish in asking for help. I've used up any available time I could with work on leave which was all unpaid in order to stay with her for the first couple weeks during this recent stay here and now she's back in  again and I feel helpless. Between missing work, driving back and forth downtown every day and even parking it's wiped us out clean. Her medical bills and supply cost are let's just say obscene and there's a lot insurance doesn't cover. And now with the whole Ohio thing I just don't know how were going to do it. You do everything you can when it's your child but what happens when it's not enough. I literally work 7 days a week to try and make up for this but what do you do when you just keep getting hit harder and harder. This little girl is my life and I would prostitute myself out if need be in order for her to just be ok. She is the sweetest thing and takes it all like an unbelievable little trooper. We just need to be able to find out why because she doesn't deserve any of this


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Maureen Carey 
Philadelphia, PA
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