Hi!
I'm Alyssa. I'm 18 years old & i'm going on my Make-A-Wish trip to DisneyWorld from December 2nd-9th.
Joining me will be my Mom , Dad , Brothers Sean (14) and Derek (14)
I'm super excited! The main focus of my wish is Animal Kingdom & SeaWorld, because i love animals!
I have been sick since I was 14 years old. I have a rare blood/liver disease called porphyria (HCP). I have to be completely covered when i'm around the sun & flourescent lights (all UV rays.) I have peripheral neuropathy & gastroparesis, a completely paralyzed digestive system, and have to be fed through a tube. (GJ tube)
I have spent more than 150 days in-patient in the hospital over the past 3 years, with more in the future.
I'm in charge of planning my trip, so i'll need some help!
Any tips on travelling with a feeding tube would be excellent! I'm hooked up to the pump (its a portable one, in a small backpack) for 19 hours/day.
thanks for reading!
I'm Alyssa. I'm 18 years old & i'm going on my Make-A-Wish trip to DisneyWorld from December 2nd-9th.
Joining me will be my Mom , Dad , Brothers Sean (14) and Derek (14)
I'm super excited! The main focus of my wish is Animal Kingdom & SeaWorld, because i love animals!
I have been sick since I was 14 years old. I have a rare blood/liver disease called porphyria (HCP). I have to be completely covered when i'm around the sun & flourescent lights (all UV rays.) I have peripheral neuropathy & gastroparesis, a completely paralyzed digestive system, and have to be fed through a tube. (GJ tube)
I have spent more than 150 days in-patient in the hospital over the past 3 years, with more in the future.
I'm in charge of planning my trip, so i'll need some help!
Any tips on travelling with a feeding tube would be excellent! I'm hooked up to the pump (its a portable one, in a small backpack) for 19 hours/day.
thanks for reading!