Julian's Brain Surgery

Julian was born on December 4th 2017 at 37 weeks old. From the moment he was born he has been nothing but a brave fighter. He was born with Group B Strep & spent 2 weeks in the NICU before being healthy enough to come home.  At 6 months old, Julian had his first seizure. It took a few weeks but after several seizures & a hospital stay at Randall's he was diagnosed with Complex Partial Epilepsy. Over the span of a year he was put on 4 different medications as well as the Keto diet but continued to have roughly 4000 seizures in that year span.  None of the medications have worked in controlling his seizures though, so Julian's Neurologist referred us to Doernbecher Children's Hospital to get a 2nd opinion. This new Neurologist wanted to do a battery of tests including EEG's, MRI's, PET Scan's & SPECT Tests.  Julian's motor function was slowly starting to deteriorate & he can no longer crawl, walk, stand on his own or use his right arm/hand. He is currently cognitively delayed as well with only 5 words in his vocabulary.  We were scheduled for a follow up appointment on Tuesday, August 6th 2019 at Doernbecher's when we received some life changing news, the Epilepsy was merely a symptom of a much larger problem. Julian was diagnosed with Rasmussen Encephalitis (a chronic inflammatory neurological disease). Our little boys brain is not working on the left side & our 20 month old son needs to have a Left Hemispherectomy soon before the disease takes his vision out of his right eye. Although there are risks associated with brain surgery, this procedure should give him a more seizure free life, remove the part of the brain that is damaged as well as give him the ability to walk & catch up cognitively. He is not going to likely regain mobility in his right arm/hand though & although he will walk again he may require a brace & walk with a limp. Although Insurance will cover a great deal of the procedure, we are a single income household, family of 7 & we would like for my husband to be able to be at the hospital with us & available for the early parts of recovery. The goal is that he is able to take a month off of work which should cover Julian's entire hospital stay as well as a bit of time getting settled in at home. We are raising money to cover our mortgage as well as other house expenses for our other 4 children to still be at home during this time. In addition to our regular monthly bills we will need to continue renting a wheelchair & walker as well as the communication devices he will need for rehabilitation until he is able to become more verbal. Any addition money will be put towards Julian's future medical/rehabilitation needs for the months after surgery as well as possibly some in home help with our other 4 children once my husband returns to work. Steven & I are not the kind of people to ask people for help needlessly. We actually don't ask for help very often at all. Julian needs both of us though at that hospital & our other children will still be depending on us too. We appreciate all the love, prayers & support our families & friends have given us this past year. I truly don't know what we would do without you all. You guys simply mean the world to us.  We appreciate & thank everyone that is able to donate any amount to our cause. We would also appreciate anyone that is able to just take a minute to share our story.  THANK YOU!