Isaac Andrews is an animated 9-year-old boy from Minnesota with a quick wit and love for storytelling.  His family and friends are always smiling when he is around because his laughter and spirit is contagious.  Talking with 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 had many successes each year since his diagnosis due to the strict treatment plan that his parents help him stick to.  Isaac’s family has alarms set every 6 hours, to ensure he takes his medications that help manage his cystinosis. He had a g-tube for 6 years to ensure he was getting the nutrition needed to grow as the medication made him feel sick quite often which left him nauseous and unable to eat. One of many milestones was at 6 years old when he was able to have the g-tube removed as his growth was back on track.

In 2022, Isaac had a bilateral distal femoral growth modulation surgery to help his bones strengthen and grow straighter so he can walk and run without pain or issues as he continues to get older.  His most recent milestone was the beginning of 2024 when he had the metal pins removed due to successful surgery outcomes and excellent straightening of his legs.

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.  We hope to continue supporting the CRF community with donations from Isaac’s family and friends and events in the future.

As Isaac gets older he is learning to understand the importance of being consistent with his treatment plan of taking his medications consistently and attending his many medical appointments. Issac reminds us he is not defined by his cystinosis diagnosis and will break every barrier that is in his way. He is our real-life hero.  He will start 4th grade in the Fall of 2024 and enjoys spending time with his friends at school and has a true passion for gaming, (after his school work is finished of course!) and he enjoys fishing the Minnesota lakes with his dad! 

We continue to be 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 shine his bright light with many others to come.

Thank you for your support!

The Andrews Family
Dana, Ben, Isaac and Isley