E B genetic skin condition

[legojeff79@gmail.com]

My baby boy has just been born at 31 weeks. After arriving my c section he was taken straight to nicu where he is being tested for EB. Which is a genetic skin condition that can cause all matter of others problems. It looks like our little boy has a severe case of EB. He has problems with his stomach. Doesn’t look like it’s connected to his LP. His windpipe is to narrow. His right has not formed and has no ear canal.
The dr ja said if it goes bk confirmed at as a severe case of EB then life expectancy is not good at all.
This condition affects 1/50000 children. Givin it a % rate of 0.002%. Are there n e other parents out there that have children affected by this horrible condition

[advhccenter]

Epidermolysis bullosa is a gathering of intriguing illnesses that make the skin be delicate and to effortlessly rankle. Tears, bruises, and rankles in the skin happen when something rubs or knocks the skin. They can show up anyplace on the body