Sometimes we take for granted the little things because we get so caught up in life and living. We forget how good we have it until we compare our lives to the lady across the street who is battling cancer, the friend who loves children but will never be able to have them and the one year old little boy who has been battling an uphill battle before he even came into this world. We are truly humbled to be reminded of that with our dear clients whom we get to know on a personal level as we capture their moments. We were head over heels in love with one of the superheroes that came in for our Superhero Tots Session and after hearing his heartfelt story, we were touched and taken back by his strength and bravery with what he has faced…and all before his first birthday. We were honored to capture his milestone and wanted to share his story with you. We hope everyone hears about his journey because he is a strong little soul!
In his mother’s words…
“When we were 20 weeks pregnant, my OB/GYN noticed a “spot” on Evan’s heart. After seeing a Perinatologist, we were informed that the spot was a tumor. Based on the size and growth rate of the tumor, we were told that our baby had a genetic disorder called Tuberous Sclerosis. We were watched very closely and were told we could deliver at any time starting at 24 weeks. Basically, they were waiting for signs of heart failure, at which point they would deliver the baby. We knew that he would go to the NICU right away so they could run tests and diagnose the severity of the case. There were SO many unknowns in regard to his heart when he was born. They weren’t sure how it would function on it’s own. Worst case scenario was needing to be placed on the bypass machine and needing immediate open heart surgery. Fast forward to 38 weeks and 2 days…I went into labor. We had planned a cesarean section since his heart was too delicate for labor. We had the whole team ready and he came out crying, pink and perfect! He went to the NICU where he was observed and it was confirmed, Evan has Tuberous Sclerosis. TS is an abnormality in the chromosomes which are responsible for suppressing tumor growth. As a result, Evan has several small tumors in his brain, a tumor in his left eye, a VERY large 3cm tumor plus several othesmall tumors (too many to count) in his heart and cysts in his kidneys. He also has a metabolic disorder, unrelated to the TS called hyperphenylalaninemia, but we won’t go there…lol! Ok, so fast forward to 2 months of age, Evan had his first seizure. After going to the ER, they started us on medications and Evan’s seizures were well controlled. At the end of March, when he was 7 months old he started having a seizure called an Infantile Spasm. Unfortunately, they are considered the worst form of epilepsy and they told us that not only would they stop his development if uncontrolled, he would actually regress and lose skills he had already learned. We were heart broken. After many hospitalizations, we are so proud to say that he is doing great. His seizures are well controlled and his heart, eye and kidneys are developing and functioning as they should. He is in physical therapy twice a week for some gross motor delays but we have already seen amazing improvements. Also, at 19 days old we took him to the ER for vomiting. He was diagnosed with Pyloric Stenosis, a narrowing of the connection of the small intestine to the stomach. This too is completely unrelated to his TS. Within hours, we went straight from the ER to the Operating Room. It was devastating. They were really worried with how his heart would hold up under anesthesia since he, at this time had so many tumors, including the large one. Well…they were correct and he didn’t tolerate it well. He turned gray and they had to give him medicine during surgery to bring his heart rate up since it had slowed down to such a dangerous rate. As a result, he developed Mitral Valve Regurgitation (the valve wasn’t functioning properly and “leaking”) and had to go to the Cardiovascular Intensive Care Unit. Talk about SCARY! That problem is almost resolved now and should eventually go away.”
We want to thank Evan’s parents for sharing his story. It really did pull some heartstrings as we are parents as well and it is hard to hear as we see our own children in every child’s eyes. We hope that we captured him in his light and that he remains the happy and joyful soul that he is. He is everyone’s true and real superhero!