Miss Tay's cord blood infusion

Hi, my name is Taylor (but lots of people call me Miss Tay) and I am 3 months old.  When I was still growing warm and safe in mommys tummy the doctors noticed something was wrong in my head.  They told my mommy and daddy that I had no brain and that I wouldnt live to be born and if I did I wouldnt live long after.  Mommy and Daddy didnt listen to them, and decided to give me every chance they could to grow up to be big and healthy like my brothers and sister.  Mommy and Daddy went to see more doctors, lots more doctors...and while everyone agreed that something was wrong in my head these doctors were nicer...they said I could live, that I might be alright or that I might have a lot of delays. That was ok with mommy and daddy...they just didnt want to lose me.  

 These doctors also gave a name to what was wrong in my head....its called Hydrocephalus.  That means that something was blocking the spinal fluid that bathes "normal" people's brains and spines from leaving the ventricles in my brain...so they got bigger, and bigger.  Eventually smooshing my brain until there was almost none visable at all when they took my pictures.  They said it was so bad I wouldnt breathe when I was born, that Id have to spend at least 2 weeks in the NICU and that I might not be a "regular" baby at all...but no one gave up hope and I wasnt listening to anything they were saying about me!

I was born 2 weeks early, on February 6th...and I came out crying! That night they took me to a different hospital from my mommy so I could have surgery I would need to save my life.  They put a thing called a shunt into my brain, it pulls all the extra fluid out and drains it into my belly, neat huh? My dr was great, shes real nice, and my surgery was over before I knew it.  Then my head didnt hurt so much.  I only stayed in the hospital for a week...I was too excited to meet my big brothers and my big sister!

Since then Ive been doing pretty well, I did spend a few more nights at the hospital. Once when the doctors told mommy and daddy I had something called seizures, they were no fun and they made me sad, and scared.  Now Im on medicine, and likely will be for the rest of my life, but thats ok because they make me a happier baby. The other time was when my shunt came out of my head, and if its not in there its not working...so the doctors had to open my head back up to fix it.

Now the exciting part...mommy found out about a thing where they take blood that was in my umbilical cord and put it back into my little body.  They say these cells can turn into anything in the body and while they cant cure me, they might help heal parts of my brain that got damaged while it was all smooshed, or damage that my seizures caused.  My mommy and daddy saved my cord blood (daddy almost didnt get to see me before I had to go to childrens hospital because he was trying to find a fed ex) and now I get to go to Duke to have my cells put back into me! Im excited and I really hope this helps, it cant hurt to try even though its still a trial because its my own blood and cells going back into me...and Ive been stuck with so many needles for yucky things, I can take one more stick for something so good.

The problem is, daddy has missed a lot of work since I was born, with hospital stays and doctor appointments...mommy and daddy are "living paycheck to paycheck" and "robbing peter to pay paul" whatever those things mean. All I know is, for me to be able to go to Duke we need some help...the immediate need is for 75.00$ for the storage of my blood and money for the trip from PA to NC...like a hotel room for 3 nights, food, gas those things.  Gas is expensive and since they arent making me sleep at the hospital, mommy and daddy can't just share my room like they usually do. But also, since this is an experimantal procedure mommy is afraid that my insurance wont cover it...I have quite a few bills that my insurance wont pay, but mommy is fighting threm for me. She always fights for me.

Please help in any way you can, every single dollar helps.  Even if you can't donate any money, if you could please pray for me...and tell your friends.  I'm doing better than any doctor thought I would, and I hope to stay that way.

Love and kisses to you all,

Miss Tay

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Organizer

Ashlee Stormer 
Organizer
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