. >> so i have a rare genetic disorder called maroteaux-lamy, or also known as mps vi, and i take annzyme replacement once a week to help me live and grow. it's my naglazyme. >> she has to go through a long procedure called an infusion, that pumps the medicine into her veins. >> it's 4 hours and 10 minutes on a pump. oh, she's beyond brave. she's very brave. and it's because she knows the importance of getting her medicine. so she knows she has to do it. >> health professionals like pearl are able to help kids like alena deal with their medical conditions, in part thanks to donations to children's miracle network hospitals. >> well, i think it's great that people in our community has contributed to my care because then i know that there's people out there who actually care and that want to help. >> you might be at a costco or a walmart and see our children's miracle network hospitals balloon. and you can pay a dollar and that donation will go to your local children's miracle network hospital -- whichever one is in your community. >> alena regularly visits the children's hospital at m

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