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Hi my name is Ashley Trinity Johnson.

I was born April 13th 2021. I was born with coffin-siris syndrome and Dandy Walker syndrome. Due to my complications I have had five surgeries on my tiny body. I have a tracheostomy and a feeding tube called J-tube an a G-tube. I’m also on a ventilator. I had surgery on both eyes. I have tubes in both ears. I am waiting on my second hearing test. It may be leaning towards I may be deaf. I also have fluid on my brain. Along the line, I have to have surgery on my spine. I haven’t been able to come home since I was born. But with your help, I will be able to be home with my parents an 5 brothers an 2 sisters. Yes have a big family. I can’t wait to be reunited with all my family. I also can help other families that have kids with Dandy Walker, coffin-siris syndrome because my parents didn’t have a clue what both syndromes meant. But now they have a understanding and a sense to my disabilities. Now you can watch my journey as I grow and develop. Blessing to you all, thank you, love Ashley Trinity Johnson ❤

Updates (1)

October 15, 2021

Ashley is diagnosed with Dandy Walker syndrome Ashley just had her fifth surgery Friday,G-J Tube. She also just had two tubes placed in both ears. They just perform a hearing test and think she might be deaf in both ears. Our baby girl is really going through a lot so please pray for us. Mind body and soul. thank you

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