Sebastian's MS Journey

In January 2016, right before his 26th Birthday, Sebastian Hutchison was taken to the Wooster Community Hospital ER due to numbness in his face and head. An MRI was done & Sebastian was told he had 13 Lesions on his brain, Doctors stated it was very unusual but appeared to be either Multiple Sclerosis or a form of Lymphoma. He was transported immediately via Ambulance to University Hospital where they diagnosed him with (ADEM) Acute Disseminated Encephalomyelitis, a rare auto immune disease cause by a virus of some type. This disease is marked by widespread inflammation in the brain & spinal cord. ADEM also attacks the Central Nervous system. The symptoms of this disease are very similar to Multiple Sclerosis, so it is also sorted into classification of Multiple Sclerosis. However the Flare caused by ADEM will only happen once while Multiple Sclerosis is marked with several Flares over a period of time. He was treated with Steroids and sent home. His condition however did not improve it worsened. He couldnt walk with out help, his vision was impaired, as well as his hearing. He went to get a 2nd opinion, at this time he was diagnosed with Multiple Sclerosis. His condition continued to decline at a very alarming rate so he was hospitalized and plasmapharesis treatments were administered (this is when they put a port in the chest and they basically remove your blood and filter it and put it back, this is done over several days) He was then sent home with hopes of improvement. However his condition continued to decline. He was treated monthly with Infused MS medications, to no avail his condition still worsened. They changed his medications to stronger ones around May 2016, they started treating him with Tysabri (often described as the THE BIG GUN medication for MS) he improved slightly. In August 2016 he lost his job, due to his Health Condition, which also meant he lost his Insurance. This led to "NOT" being treated for 2 months while other Insurance was obtained. He resumed Tysabri Infusions in October, his condition continued to spiral downward. He was hospitalized in November 2016 and Plasmapheresis Treatment was once again started. He was also tested for certain Viruses that can be triggered in the body from the medications he is being treated with. One of those viruses is FATAL, by the Grace of God he tested negative, however the risk of those viruses still being triggered is very high. He was also tested for all Chronic Leukemia's, again by the Grace of God he tested negative. He was sent home and unfortunately still declined. Sebastian is now in a wheelchair and requires 24 hour care. We were told in November that he has Relapsing Remitting Multiple Sclerosis, but a very aggressive case which could end up being determined as Secondary Progressive, and over a longer period of time could be diagnosed as Primary Progressive (it can sometimes take a couple years to make the proper diagnosis due to the progression of the disease) The only options available for treatment at this point are medications not yet approved by the FDA for treatment of MS. So the requests were made to his Insurance company for treatment to begin with said medications. On December 10, 2016 he was admitted once again. His vision has worsened, his speech is slurred, he is losing his hearing. We were informed during this hospital stay the MS meds that they were treating him with, his body has been rejecting. No sooner than the meds were administered his body was nuetralizing the effects of the medication. He was also just diagnosed with another Nuerological disorder (PBA-Pseudobulbar) that 10% of MS patients develop. In addition to the MS and PBA, Sebastian has been a Type 1 Diabetic for almost 20 years. The MS and Diabetes effect each other in a very negative way so treating the Diabetes has become very challenging. As of December 12, 2016 the medication we were waiting on approval for was approved!! They will start those Infusion Meds on December 14th, 2016. Now we must prepare for him to come home. He shares a home with his Fiance' (who works and is a full time Student) their 2 Children Jaelyn and Landon, and their 2 dogs. With all of these changes in their lives due to Sebastians declining health conditions and loss of his job finances are very limited. Many things in the home will need to be modified to meet Sebastians needs. We all know how stressful this time of year can be, trying to manage finances, time, and schedules, it has been recommended that upon leaving the Hospital it would be in Sebastians best interest to enter into an Acute Rehabilitation Facility where he will stay for a period of time to receive Intensive Physical, Occupational, and Speech Therapies. This unfortunately is a very crucial and stressful time so we are asking for help from our friends and family. Anything you can do to help would be greatly appreciated. Thank you so much for your positive thoughts and prayers. All things are possible through Hope, Faith and Love.