Elias is one of our 2020 Therapy Assistance Grant recipients. His story is told here by his mother, Janina.
When I was 37 weeks pregnant I got ill and ended up in the hospital. I was told I would be induced and 2 days later I had Elias thru an emergency C-section. At that time, I was experiencing high blood pressure and complications with child birth. Elias was born 2 weeks before his due date. It seemed that we delivered a healthy baby boy. It wasn’t until his 6 month check up that his primary doctor noticed Elias wasn’t hitting his milestones like rolling over and crawling. We also noticed Elias left eye would go outward. This concerned the doctor and she recommended that we take Elias to see a neurologist. An MRI revealed that Elias had had an in utero stroke either during pregnancy or at the time of delivery. I was devastated and in shock.
As Elias continued to grow up we noticed he would fist his left hand and his feet were not lined up correctly causing him to fall frequently. Elias qualified for early intervention therapies: OT, PT, ST and DT for the next 2 year. He was also fitted for a left hand splint and AFO braces for both his feet to help him walk. With home therapy and his equipment Elias was doing great, but then in December 2018 Elias started experiencing what seemed to me to be some type of seizures. I began doing research on what I was witnessing and recording his episodes on my phone. I scheduled him to be seen by the neurologist and explained to him what I noticed but he wasn’t giving me the answers I was looking for. He scheduled him for a one hour EEG test. We were told it might be focal seizures but the doctor didn’t seem very knowledgable about what was happening to my son. We were prescribed medication for his seizures but I refused to give it to him without truly knowing what was happening to my son. This went on for months even in his sleep and I was heartbroken. Our neurologist scheduled us for a home EEG test with a camera monitor to captured footage/ testing for 2 days. Unfortunately nothing was captured due to the equipment not working properly. I was totally bummed about this. I needed answers so I began to pray for my son, and then a miracle happened: the so called seizures stopped happening. I was over the moon!
Life continued on but eventually early intervention ended and my son still hasn’t hit all his milestones and is struggling in some areas. I applied for SSI (disablity) and was told he is showing signs of Autism. I had no clue what that was. I did my own research and wanted to rule that out. We were sent to Erickson for observations> in July 2019, my son was diagnosed with Autism. Once again I was devastated but made peace with it. I just want my son to get the help, support and services he deserves in order for him to flourish academically and in life once I am no longer here. I love my son dearly. It’s been a long, sad, at times frustrating journey but this is his story and I will be here to advocate for him and help him along the way. Your donations are truly a blessing for my son and my family. I want to see Elias do great things in this world and I know he will. I want to thank you for your support.