Hi Everyone!
My name is Osama Hamad. The meaning of my name is Lion which fits me perfectly because I am super strong fighter. My story begins when I was still in my mom’s belly. Mom & Dad were so excited to meet me and I knew that early on because they read and talked to me all the time! When I was only 24 weeks my family found out that my journey before I would come home would be a tough one because there was fluid around my belly. I could not wait to meet them and came WAY too early, at 32 weeks old on April 19th 2016, I made my debut. After I arrived, I knew there was trouble. So many doctors were around and helped me to breathe, eat and do everything that I didn’t know how to do yet. The doctors told my parents that I had an enlarged liver and spleen but they didn’t know why. I was in the hospital (NICU) for almost 2 months working on getting big and better. On June 13th, I was so happy to finally be away from machines and just spend time with all my family from near and far.
Okay, Okay, Now I will let my parents tell the rest of my story.
Thank you all for reading Osama’s story, we are DeAnna and Kamel and this sweet little boy is the love of our lives. As you have already read, he had a rough start but is definitely our little fighter. When Osama was 13 months old, he began to regress and was unable stand on his own. We discussed that with his doctor and because of the enlarged liver, spleen and other complication they decided to run a genetic panel to see what was going on. In August of 2017, we received a call with news no parent ever wants to hear. She was talking about a disease called Niemann-Pick Type C with a fatal outcome. When we found out this news, all we could do is cry and hold our baby knowing that we could not lose him and would do anything we could for him. We packed our bags and moved back home in search of answers.
Our pediatrician; Dr. Gina Direnzo-Coffey, MD, who we have come to think of as part of our family helped us to connect with different specialist across the world. This lead us to Dr. Elizabeth Berry-Kravis from Rush Hospital who was in the process of treating patients in Chicago and we decided we had to learn more about what she does. When we met with Dr. K, we instantly knew that she cared for Osama in ways you can only dream his doctors would and although she was very honest with us, we had hopes for our sweet boy in the form of the symptoms down in hopes for time for a cure.
For more than two years we have traveled back and forth to Chicago every other week to receive his life saving infusions. We were very fortunate to be able to receive some infusions closer to home, but many still required us to travel back and forth. Beginning in January 2021 we were no longer able to receive his infusions at home, so the travelling began again, but in a PANDEMIC! Osama participates in a treatment called VTS-270 that is in trial phases, which Osama was granted compassionate use through the FDA to receive. It is injected through a lumbar infusion every other week, which means he is put under general anesthesia for each treatment. This is not a cure, he will need this treatment for life. Our little boy is a true fighter, just as his name stands for. We are so proud of him for how hard he works everyday. He does weekly therapies including speech, occupational and physical therapy. He is only 4 so we know we ask a lot of him but he is strong and we will do everything for him and kids just like him that are affected by this terrible disease. Thank you for taking the time to read about Osama’s story. We will never stop searching for a cure!
Osama's Story
NPC Everyday
Every NPC family has a different story, a different path that lead them to NPC. DeAnna was able to speak at a Patient Focused Drug Development Meeting in March of 2019 regarding how NPC affects their daily life. DeAnna was one of many panelist, click the link below to watch the conference and get a small look into the world of NPC.