Archie was born on 5/25/25. As his adoptive family we didn’t know really what his health would look like. We assumed a nicu stay but when we got to the hospital the nurse practitioner said we need to talk before you go in there.
Archie couldn’t breathe on his own. His airways were 100% blocked by bone. He was intubated for over a month. His ears were misshapen and at that point they tested for CHARGE. When his eyes came back as coloboma we didn’t need to wait for the results after 5 major surgeries on his sinuses his nose was finally open enough to breath. We discovered he’s mostly deaf in one ear and severely hearing impaired in the other. His vision will be questionable. His heart has a birth defect although as of now it can just be monitored. He’ll always be itty bitty (not on the height curve and 3% on the weight). His airway is very questionable. Most charge kids can’t swallow. He takes medications now for that and waiting on more procedures to stop the secretions. His trachea is very scarred and narrowed. He has sleep apnea. Facial palsy.
he has 23 providers! Not including night nurses and help me grow.
as you can imagine this is overwhelming and when we first learned of his diagnosis we didn’t know what to do we were the first a lot in his hospital we got a lot of “I don’t know” from providers. People told me to advocate. What does that even mean?
that’s where the CHARGE Foundation stepped in. They gave me resources to learn. Every day at rounds I was teaching on what I was learning. I found research and articles and ideas. I learned CHARGE was much more than coloboma, heart, atresia, restricted growth, genitalia, ears. I found local moms with CHARGE KIDS. I had an ambassador at the foundation guiding me. They told me about Cincinnati CHARGE clinic. They help other families pay to get to the clinic. In 2 years we’ll get to go to a conference and meet CHARGE families.
please donate if you can. Join for the annual walk. Spread awareness.
On April 25, 2026 my team will be participating in the 7th Annual Walk and Roll for CHARGE.
CHARGE syndrome is the leading genetic cause of deaf-blindness. Many individuals with CHARGE syndrome overcome insurmountable challenges to far surpass expectations.
All funds raised will help support individuals with CHARGE and their families through direct assistance, research, and outreach.
Will you help us support the CHARGE Syndrome Foundation by making a donation in honor of our efforts in the Walk and Roll for CHARGE?
Thank you for your support!
