Flying High with Ethan

“From roller coasters to indoor skydiving, this wish let him explore his adventurous side”

Ethan wasn’t drinking his bottle, had a high pitched squeal, and the compressions in his stomach for breathing were abnormal. Ethan was admitted to the hospital, and doctors placed a feeding tube in his little body. Then he started to have seizures. Ethan was first incorrectly diagnosed with an illness that would mean Ethan only had 3 months to live. When the doctor noticed the oddly sweet smell emanating from Ethan, he ordered further testing and discovered Ethan had Maple Syrup Urine Disease.

Maple Syrup Urine Disease is defined as the inability of the body to process certain protein building blocks (amino acids). It gets its name from the distinctive saccharine odor of affected infants’ urine. Left untreated, it can lead to seizures, coma, and death. At ten days old, Ethan began treatment for his new diagnosis, but the treatment caused him to stop breathing, and he had to be intubated.

Now at age 11, Ethan manages his life-threatening illness with a daily 20 ounce metabolic formula drink to balance out his protein intake. He can only have ten grams of protein a day and is on a strict diet. Ethan cannot have meat or any dairy products.

Ethan loves to ride roller coasters, so Kids Wish Network sent him to Orlando for a theme-park filled trip of a lifetime. He had a blast going on rides and visiting the attractions at Epcot, Magic Kingdom, and Hollywood Studios at Disneyworld. His favorite ride was Toy Story Mania. Ethan and his family also enjoyed tickets and an all access fast pass to Universal Studios and Islands of Adventure. He had his choice of roller coasters from Space Mountain to the Incredible Hulk. In addition, the adrenaline-seeking boy was thrilled with a surprise visit to iFLY on his itinerary. The indoor skydiving expedition made Ethan feel like he was actually flying. His stomach dropped while the falling sensation took over his body in the gravity-defying wind tunnel. The wall-to-wall cushioned flight chamber provided a safe space for him to explore his adventurous side.

Ethan also had the opportunity to ride the Orlando Eye and tour Sea Life Aquarium and Madame Tussauds during his stay. Each day he and his family were treated to delicious meals at restaurants like Chili’s, Bahama Breeze, and Sweet Tomatoes where the staff went above and beyond to make the visit memorable while also taking into account Ethan’s dietary needs. As welcomed guests, the family was able to retire to their suite at the fabulous WorldQuest Orlando Resort to rest up before the next day’s activities. Designed specifically to suit his personality, Ethan’s wish couldn’t have been more perfect.

Kids Wish Network would like to thank the following sponsors for their participation in Ethan’s wish:
• WorldQuest Orlando Resort
• Compassion Partners
• iFLY Orlando
• Merlin’s Magic Wand
• Sea Life Aquarium
• Madame Tussauds
• The Orlando Eye
• Chili’s
• Sweet Tomatoes
• Bahama Breeze

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