The Simina Family

Hi my name is Maria Encher and I have a 1yr old son named Evangel Junior JAMAL Simina, mostly known as Jamal. I came to St. Louis, MO about 1yr and 1 month ago to give birth to Evangel from the island of Guam. At 30 weeks I had my ultrasound and my OBGYN told me the ultrasounds detected that my son had a small chin and that I had so much amniotic fluid. I did 2 amnio reductions in Guam but even with that the fluid kept accumulating, so my OBGYN told me I needed to choose a state to give birth in, because Guam didn’t have any pediatric surgeons at the time. I was indecisive of which state I wanted to go to whether it was Hawaii or California. Both of those two states are very expensive so I didn’t not with any of them. I ended up with choosing St. Louis, MO because Jamal’s dad had a brother that stayed in Warrensburg, MO and not really knowing the condition of how severe my situation was, we thought that after I give birth and if nothing was to go wrong we can just stay with Jamal’s dad’s brother before heading back home to the island of Guam. That was not the case though. At 30 weeks I was given the news that I had to leave the island to give birth, at 31 weeks I had to file for maternity leave and get my insurance and prepare myself to leave and at 32 weeks we arrived in St. Louis, MO. Talk about a very fast and last minute move for us. As we went through our appointments with fetal care I was still having so much fluid and ultrasounds weren’t as clear as they usually were. I was told I had to get induced at 37 weeks, but Jamal decided to come on his own at exactly 36 weeks. I gave birth to Jamal in the Operating room with about 20 plus people in there with us. From Anesthesia, ENT, Difficult Airway, OBGYN, to the NICU nurses and doctors. He was born on June 1, 2023. Right when he was born he had to be intubated. I did not get to see Jamal until he was 2days old, that was also the same day of when I learned of his condition. I was told Jamal was born with a rare genetic syndrome called Treacher Collins Syndrome. An inherited condition in which some bones and tissues in the face aren't developed and with a very smal airway. However, in both Jamal’s father and I’s case we did not have a history of the genetic syndrome in our line of families. So in our case Jamal is the first one to have it. We spent a total of 121 days in the NICU at St. Louis Children’s Hospital and another 120 days at Ranken Jordan Bridge Hospital. During the8 months of being in the hospital Jamal has done a Tracheostomy Surgery and a G-Tube surgery to help him breathe and to help him with his food intake. I recently took Jamal home in February, 2024. Shortly after that, Jamal’s dad decided to leave us in March 2024 so I then became a single parent to Jamal. For these 5 months that I have been doing it all alone with no support and family out here with us and no help with home nursing. It has been a really huge struggle for me. I had to resign from my recent job to be able to attend all of Jamal’s doctors appointments and be able to make it to meetings with nursing agency for our chances of getting some help with home nursing. After I got out of a job we were served with eviction papers for our apartment because I couldn’t afford all the bills by myself. We went from a 2 income family to just 1 income. So it has been very hard being able to afford bills lately. I am trying my best to reach out to resources to help us with our situation, a lot of them have a waiting list and have been out of funds. The only income we are currently relying on to get us through is Jamal’s SSI check or $637.00. I am currently trying to find a job that can work around Jamal’s schedule with daycare and his appointments so that way we can more income coming in. To also be able to afford our rent, utilities, and car note and for food. I am really hoping your organization can help Jamal and I overcome our hardships at this point of our lives.