ANCHORAGE (KTUU) The Adolfae family consists of mom Kellie, dad Patrick, big sister Hazel and little brother Cahill, who has a personality all his own and isn't camera shy.
Cahill and his sister Hazel at Legoland courtesy of Make A Wish.
Looking at him, you wouldn't know it, but he suffers from Pompe Disease. It's a genetic disorder where he lacks an enzyme that breaks down glycogen, which is where energy is stored.
"Once glycogen builds up, it inhibits the use of the organ or the tissue, and mainly for Pompe, his muscles, diaphragm, heart, and liver," said his mom, Kellie.
Every person that has it is impacted differently, and for Cahill, his is an even more rare form of the already rare disease.
"It's challenging at times and you try not to worry about his future, but it's definitely there, looming, but you just do what you do, just keep going," said Kellie.
Being the resilient kid he is, Cahill's doing well and enjoys a lot of things, one being building legos.
"He loves lego, plays with lego, I mean he's the kid that you hear noise at 11 o'clock at night when he's supposed to be sleeping, he's putting legos together with a flashlight," she said.
Make A Wish sends critically ill kids and their families to the wish of their dreams, so when they stepped in, sending the Adolfae family to Legoland was a no-brainer.
"It's just a great experience to just go and be a family and enjoy a wonderful experience that we wouldn't normally be able to do as a family," said Kellie.
She said it was also a relief knowing any accommodation in making Cahill feel comfortable was already taken care of. She added the worry never goes away, but the Legoland trip was certainly an escape, even if it was just for a day.
Help send kids like Cahill on the wish of their dreams by donating unused airline miles to our 2 Million Mile Challenge.
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