In December 2014, Our 16 month old son Drake started back tracking on his milestones and having symptoms that include raging fits, sleepiness, eye twitching and involuntary movment of his body. He is also no longer capable nor interested in walking or talking. Prior to these symptoms, Drake was a very happy, walking and talking toddler.
After three trips to the ER, seeing a neurologist and an abundance of testing. They had located a tumor(neuroblastoma) located in his left adrenal gland. Shortly after, Drake was diagnosed with Opsoclonus Myoclonus Syndrome (OMS). OMS is a condition where the body creates antibodies to fight a cancerous tumor (neuroblastoma), But some of the antibodies get confused and attack the brain, causing neurological symptoms including, rage, chaotic eye movement and involuntary tremors.
Only 1 in 10 million children have this terrible disease, and these kids are often called OMS Warriors. It is a long road to recovery, starting with fighting the cancer side of the disease, then fighting the OMS side and trying to reverse the neurological damage.
Drake has just begun his road to recovery, hes had the tumor removed and we are currently pending a scan to insure there is no cancer in the body. After we complete the scan we will being starting IVIG to help give his immune sytem a chance to reconize the brain is not a threat. Kids diagnosed with OMS often fight this disease for many years and sometimes for a life time.
Drake is a very strong little boy and we truly believe in our hearts he will recover. Your support will help us cover the cost of extensive medical bills, traveling for treatment and help us with living expenses while mom cant work. While we have mixed feeling about raising money in this way, many people would like to help and this is honestly the best way for us right now. Do to our future being unclear and no way of knowing how long it will take to recover.
Thank you for hearing our story.
Please keep Drake in your thoughts and prayers.
Please continue to follow Drake's story on his Facebook Page under "Drake's Battle with OMS".
Drake was born September 18, 2013 in Silverdale Washington to first time parents, Zac and Carrie. He has always been a fun, loving, vivacious, and happy little boy. Drake started talking, first word was mama, at 10 months old and he only took off from there. Within the next 2 months he was walking and using more words then we could imagine such as, kitty, sister, little sister, bye-bye and dada. By 15 months Drake was putting two word sentances together and trying to run.
Drake's favorite things to do were to pet the animals, taking baths and swimming, dancing and exploring everywhere we went. Drake was also such a charmer, he would flirt with any lady and flash her one of infamous smiles.
Then he lost all of it. He lost his spark, walking, talking and sadly his whole lovable personality within 48 hours. What we thought was just a cold at first kept getting worse and changed our lives.
Please help us get our son back with his medical treatment that OMS requires. We will be facing this for at least the next 1.5-2 years, but OMS never truly goes away. OMS, will go into remission but anything as little as a common cold can bring it back.
- Rosemary Stehlik
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