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Old 08-27-2013, 09:42 PM   #1
Rx774
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Join Date: May 2012
Posts: 115

Annika's Make A Wish Trip on Disney Dream (8-18-2013)

I have a lovely 12 YO daughter, that means the world to me. She was born in 2001, and shortly afterward diagnosed with a rare metabolic disorder called MSUD. It basically prevents her body from metabolizing high amounts of protein. Too much protein in her system, eventually works its way to the brain, where it can become toxic and starts to damage the brain. In dozens of occasions over the years Annika has lost the ability to hear, walk correctly and even talk correctly, and has even seizure.

In a perfect world, just monitoring her protein intake would be a perfect balance. But unfortunately with this condition, other things can set it off like stress, colds, any type of infection that messes with your body's metabolism. She has been given excellent care at Philadelphia's Children's Hospital. About 6 years end, after thinking we'd have to deal with this forever, it was brought to our attention that a liver transplant would make it easier to cope with her disease. While not being a cure genetically, it would offset all the negative effects of MSUD, while allowing her to eat a normal diet. We at first put it off, thinking it was a bit too much for a young child to endure, but after a bad spell with my son Christian (also born with MSUD) which almost lead to his death, we decided to no longer gamble with this disease. MSUD can and has unfortunately taken people out at any age. So if we were going to get it done with 1 child, might as well do both.

Prior to getting ok'd for the transplant list, they have to make sure your body is physically ready. Upon scans, they discovered she had a hole in her heart. To my surprise... it was a day procedure. She was home the next day. Its amazing what our medical science can do. Snaked the tools right up her femoral artery, and closed up the hole from the inside. Anyway, she was ready, and eventually got her transplant. We've even made friends with the parent of the her donor, which is extremely, extremely rare. Even made the local newspaper in doing so.

Anyway, our wish granters came May 2012 and listened to Christian and Annika's Wishes. She wanted to do a Disney Cruise, and no way we could of done it by August, that close, especially since we didn't have passports yet. So we did Disneyland/Universal Studios last year, and this year, Annika got her special wish .. a Disney Cruise last week (right after her birthday).
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D (39) M (36) Annika - Wish Kid #2 (12) Christian - Wish Kid #1 (7) Dylan (3)
Christian's Make A Wish Trip Report

Annika's Make A Wish Trip Report
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