I found out I was pregnant unexpectedly and we were excited! And better yet, I got my baby boy! It couldn't be any better. Then at my 30 week ultrasound, I found out my baby has a condition called “cdh ” and required surgery after birth .Although it was devastating, the hospital was optimistic that all will be well with my sweet boy Maximiliano and he would be home in no time. After birth, Maximiliano was placed on Ecmo and when he was two weeks, he has his first surgery. 

In the meantime the medical staff suggested a genetic test to see if Maximiliano had any genetic conditions. The results showed he has a condition called Kleefstra Syndrome, a  rare genetic disorder that even the doctor in the ER had never treated a patient with  his condition. That changed our world forever. ax had to stay in the hospital for the first 8 months of his life, which caused his dad and I to miss a lot of work and eventually let go from our jobs. Our employers just couldn’t understand the complexity of our sons health condition. 

Maximiliano is home now and it’s the most rewarding feeling ever!. He came home on cpap continuous feeds through his gj tube as well as a ostomy bag. Because his dad and I had to focus on taking care of him , we have fallen behind on our bills. This is something I never thought would happen to us, but our family has had the hardest year of our lives. Any help is greatly appreciated. Thank you and God bless you all .