I have a family friend with CHARGE, and I'm watching videos like these to learn more about her condition. Ultimately though, you can only learn so much about it without meeting actual people with it and understanding their experiences. Videos like this help because you can see the personal side of a clinical diagnosis.
@@Erin-dw2hq Not too good Erin. Really struggling to cope off the ventilator and he's had the major transposition of greater arteries op. I'm so desperate for him, his parents and my granddaughter.
@@lesleyhogg2495Hi there, my baby brother had similar defects of his airway being not fully developed. He was born a month early and the doctors said that only surgery might help. But my brother also had severe T cell lymphopenia and it would be too risky to do the surgery. After a month, my parents decided to let him go peacefully. So ever since I’ve been interested in Charge Syndrome as I’ve never heard of it before. Hope your grandson is okay
@@asianchloe Thank you for messaging me. My little grandson is at home. Complex care. I don't know how things will end, but for now his parents, we all, have him to love. It's heart breaking.
