Home > For Families > Get Support > Rare Disease Day > Alden’s Story

Alden’s Story

Young boy in a striped shirt and glasses sits in a chair. Young siblings, boy and girl, sit in a chair looking at an ipad. Young boy sleeps in a chair next to his sister, both in swimsuits, on a boat, with water in the background. Two young brothers sit on the floor next to each other, wearing matching Kansas City Chiefs football jerseys.

Up until birth we expected nothing other than a healthy baby, and little did we know how much our lives would change. Alden’s ear abnormalities were discovered immediately after birth, and the heart defect and choanal atresia were discovered shortly after at which point he was transferred to Children’s Mercy Hospital in Kansas City. He spent the next three months in the NICU where he had open heart surgery and g-tube surgery amongst countless scans, scopes, tests. A couple weeks into his NICU stay, Alden was clinically diagnosed with CHARGE Syndrome, which was confirmed when the genetic test results came back about 12 weeks later.

Alden has endured multiple surgeries and procedures, sees multiple specialists on a regular basis, and participates in weekly therapies and biweekly ASL and early intervention services. He has encountered many obstacles in development such as hearing loss, chronic illness, balance issues, feeding issues, and delayed growth. Regardless, he is a happy boy who loves and dancing, playing with his older siblings, and really, really long hugs!

What would you like to tell other people about CHARGE syndrome?

They are extremely tough and resilient and they continue to defy odds.