Friday, August 1, 2014

Make A Wish Trip

We have recently found out that Make A Wish is taking us to Disney World.  We are over the moon with being able to go.  They have brought me to tears twice and we didn't even do the planning yet.  Olivia has no idea what's going on either.  We have been talking about Mickey a lot and she probably has noticed that, but she has no idea what is going to happen.  Even when we are there, she won't know until she sees Mickey.  It is so wonderful to have companies that want to help sick children.  With all of this being said, it puts everything into perspective of how dangerous my daughter's condition actually is.  This is what it states when you want to refer a child:

"A child with a life-threatening medical condition who has reached the age of 2½ and is younger than 18 at the time of referral is potentially eligible for a wish."

I decided to sign her up and at the time, I didn't really think she would get approved for the trip.  I had no idea that my daughter's condition is life-threatening.  I've been increasingly scared that she will experience SUDEP (sudden unexplained death from epilepsy) due to having many tonic clonics throughout every week.  She has trouble breathing during them too.  And yet I never considered her seizures to be life-threatening.  After you refer the child, they send paperwork over to the pediatrician to fill out.  We never see this paperwork.  I have no idea what is said on it and I'm extremely curious.  Every doctor has told us that she can't die from seizures (even though we know that isn't true).  Even though we get to take this wonderful trip, we are now fully aware that our daughter has a possible terminal condition.  I hope my daughter can live a long, happy life.  
They are coming on Tuesday to plan the whole trip.  This will be a wonderful gift to give to my child.  She deserves it!

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