Isaac Andrews' Story

“His laugh, smile and storytelling ability impacts every person who is lucky enough to meet him.”

Isaac Andrews is an animated 7-year-old boy whose smile and laughter can light up a room. Talking to him you would never know that he has gone through more adversity in his young life than most of us will experience in a lifetime. Isaac was diagnosed with cystinosis in March 2016 at 11 months old. Since then, Isaac has faced every challenge head-on.  He has started elementary school and is making new friends!  As many with cystinosis experience, school can be a challenging journey to navigate.  Isaac was elated to start school! To make it easier at school and spend less time with the Nurse, Isaac had a major accomplishment when he learned how to swallow his Procysbi® pills and take his supplements and applesauce by mouth instead of through his tuber (what he refers to as his G-tube).  This meant the process of taking his medications and supplements could happen anyplace and very quickly and not stop a 7-year-old boy on the move!  He no longer needs to use his G-tube to take his medications or receive nutrition.  He has expanded the foods he eats although he still has his favorites and is a champ at always making sure his water bottle is full so he stays hydrated.  He has learned what makes him feel good, what doesn’t and when he needs to rest.  

As Isaac continues to get older, his treatment plan has continued to be modified. His medical team has added growth hormones to help his body and mind continue to grow.  Due to complications with his growth, he had a bilateral distal femoral growth modulation surgery on June 7, 2022, which will help his leg bones strengthen and straighten so he can be active and strong in the future. Isaac doesn’t see barriers; he learns to adapt!  With the G-tube on his tummy, he has had a challenging time finding clothes that fit him perfectly.  To adapt the clothes to him, his favorite new fashion accessory is the addition of suspenders that he chooses in all colors and designs.  In November 2021, Isaac’s family and friends were able to come together for a benefit to support Isaac and a cure for Cystinosis.  The love and support of family, friends, and Isaac’s community was overwhelming, and his family could not be more grateful.  Isaac’s parents were able to donate $20,000 to the Cystinosis Research Foundation.

Through all of the medical appointments, blood draws and strict medication regimen, Isaac is the one who keeps the family optimistic that they can get through anything. He is our real-life hero! His laugh, smile and storytelling ability impact every person who is lucky enough to meet him. We are so grateful to the Cystinosis Research Foundation and the Cystinosis community as this disease can make you feel isolated but with CRF we have felt a part of something greater that is working to find a cure that will allow Isaac to share his bright light with many others to come.

Thank you for your support!

The Andrews Family
Dana, Ben, Isaac and Isley

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