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My son Miguel was 16 with a healthy life full of dreams. He suddenly began to feel ill on 09/01/17 and complained of possibly developing a sore throat, I stressed about Strep and that if he thought for any reason it was Strep to let me know so that I could take him into see his Dr. He reassured me that it was not, but that he'd keep an eye on it and let me know of any changes. Two days later on 09/03/17, Miguel woke up at 8 AM asking me to take him in... Miguel complained about a Right Side of Neck pain. He pointed out that it was not his throat and now felt more like the neck. When I took a look at the neck, I did notice the Right Side had some swelling. I immediately took him into Children's Hospital ER in St Paul where he was looked over and sent home. Miguel was diagnosed with a Lymph Node infection that day and sent home with some Bactrin. I remember that day clearly, it was Labor Day Weekend and we had plans on going to the lake with the family on that day. We were home by 11 AM that morning so we kept our plans about the lake. Miguel decided to stay home that day, he said he was not up to going and wanted to rest. He took his meds along with some pain reliever and said that he'd call me if anything changed. I also told me that I was only a few miles away and would have my phone on me if he needed me. I checked on him frequently that day and was home at about 8 PM. He slept most of that day and didn't have much of an appetite. I remember that night being concerned about him, the concern I felt different. I remember setting my alarm that night for 2 AM and 4 AM, I wanted to go check on him and make sure there were no changes with him. There was just something that told me this was different, perhaps it was because Miguel hardly got sick... and even when he felt a little under the weather, Miguel was always one of those kids that wouldn't easily get knocked down. Come Monday 09/04/17 (Labor Day) Miguel was developing some different symptoms. He now had a fever of 101, he was also complaining about a headache. I again gave him his medication and the pain reliever and told him to keep an eye on it. Throughout most of that morning Miguel told me numerous times about the pain in his head and said that it didn't feel right, he stressed that something wasn't right. Then I decided to take back to the ER but this time I drove him to the Children's Hospital in Minneapolis. Once there, I requested some Lab, I asked them to draw blood and test it because it was not done the previous day in St Paul. The Nurse did but said it was normal and only came up with the Lymph Node Infection. They did also give him some fluids that day and something for his headache called a Migraine Martini. I was told that I needed to give the Bactrin a few days to do it's job, and that if Miguel did not feel better in 2 to 3 days I should then take him to see his Primary Dr. Miguel continued with his main complaint for the remainder of that day.... His headache! He continued with an off and on fever, also developed some stomach pain, nausea and loss of appetite into that evening. On Tuesday 09/05/17 it was back to work for me... It also would of been Miguel's first day of his Junior Year at Harding High School. Miguel stayed home in bed and I went to work. When I checked on him that morning he was pretty much the same with no changes. One I got to work, I decided to schedule an appointment with his Primary Dr for Thursday 09/07/17, just in case he didn't feel better. I was thinking ahead of the game here......that Tuesday 09/05/17 and Wednesday 09/06/17 was pretty bad for Miguel... He mainly slept, but the short times he would get up, he was the same... head, stomach, nausea, fever, and no appetite. I was really concerned about it... you have no idea how I beat myself up daily about this... I ask myself "If I was so damn concerned.... Why didn't I take him back?" Miguel told me at least 20 times each day that he was sick and that something didn't feel right. I will never forgive myself for this and apologize to my son every single day. My answer to that question is.."I didn't take him back because I was told by the nurse in Minneapolis that I needed to give the Bactrin time to work, that I had to give it at least 2-3 days before going back in... I remember responding to her "But.. he's been on the antibiotics for 24 hrs now.. so shouldn't he be a little better or maybe the same?... but not worse." She replied with "Well, when someone gets sick they have a peak on their illness, Miguel may have not been at his peak when you first brought him in yesterday, So he may have to actually get worse before he gets better."  Thursday 09/07/17 had arrived and I was anxious to get Miguel to his appointment that morning. I went in to check on him early morning at around 6 AM, I recall leaving the light off but was still able to see him with the lighting from the bathroom coming in. I asked how he was feeling while I sat at the edge of bed rubbing his forearm. Hoping for a good change, he responded with "The Same." I sat there for about 2 minutes staring at him... I asked about him noticing any good or bad changes but again Miguel said "No changed Mom, it's just this headache.. I just can do it anymore." I told him "You hang in there mijo (Son in spanish), your appointment is at 11 AM so I’ll wake you at 10 AM so you can shower and get ready...... " as I walked exiting his room, I stood there for a few seconds and said to him "I'll be right out there if you need me.... I love you Mijo." Miguel replied "I Love You Too, Mom" My heart breaks as I write this... If only I would of known those were going to be his last spoken words...... 10 AM rolled around, so into Miguel's room again to wake him, but this time he did not respond.  I could see his eyes moving, like a twitching kind of moving but not certain. I called and tried to wake him about 3 times in 10 minutes. I thought he was just being lazy because this is what it seemed like. The last time I called him, I observed him for a few seconds... as i stared at him, I noticed the eye thing was constant. I asked Miguel..."Hey, Miguel... are you ok?" I did not get a response. I then told him "Miguel... you are kind a freaking me out.... are you ok?" "Miguel, Should I call the ambulance?" Sadly Miguel never responded... I grabbed my phone and dialed 911, paramedics arrived within 10 minutes. I gave them the run down of what Miguel had been like the past 6 days. They went into his room and tried getting him to say something. They didn't know what to think. They did force him to sit up and keep in mind that Miguel is grunting, and moving his eyes while closed with some facial movement, but not speaking and also not opening his eyes. Paramedics forced him to stand and walk to the ambulance.... I remember the look on Miguel's face was like no other.. He opened his eyes but looked disoriented, kind of like a blind man walking. That was the last time Miguel's eyes open. I feel like I lost Miguel on that day, the look on his face while walking to the ambulance that morning was not him. Miguel was admitted into Children's Hospital in St Paul that day. He had his first clinical seizure at the ER that day shortly after we arrived there. Miguel was in the PICU for a total of 55 days and was never diagnosed. He seized over 100 times per day and no seizure medication was helping. He had a total of 5 MRI's, 3 CT's, 2 Spinal Tabs, Genetic Testing,  X Rays and labs done daily, also a biopsy on his skin for a terrible rash he developed after a couple of weeks of being there, and he had an endoscopy and colonoscopy done toward the end for non-stop diarrhea.  The Dr's ran every possible test, they tested for everything rare and not so rare. Nothing was coming back with answers.... Finally, the Dr's talked to me about a form of epilepsy called FIRE (Febrile infection-related epilepsy syndrome), they now believed that this is the type of seizures that Miguel was having.  I wasn't told much about FIRES, but that it was rare and occurs in healthy children between the ages of 3 - 16. What I know now about FIRES, I've researched on my own or with the help of my daughter.  I just never ever thought that this would kill him. For 2 whole months I believed Miguel would come home eventually. They tried every therapy known to have worked for FIRES Kids in a case or two. Therapies tried on Miguel were IVIG, Plasmapherisis, Keto Genetic Diet, and Steroids but nothing worked.... nothing was stopping these seizures. The week before Miguel passed they started him on CBD Epidiolex. I had mentioned this on week 2.... WEEK 2!!! I don't know if this was Miguel's chance of making it... I never will know.... It was just too late.... Miguel was on a very low dose of the Epidiolex for a total of 3 days... 

Miguel's heart stopped the first time on 10/31/17, He was giving CPR and Epinephrine right away and was brought back up that time.... Dr's told me they didn't know why this happened, what it meant and didn't know if this would happen again. Well, it did happen again, it actually happened several of more time through out the night. Calls were made to family and close friends that night..... letting them know that Miguel was critical and if they wished to join us, not knowing what the night held for us. ......... 

Miguel fought like I'd never seen him fight before. Miguel was tired and was declared dead at 4:50 AM on November 1, 2017

Miguel was number 4 out of 6 kids.. he was actually my baby for a whole 10 yrs before remarrying and having number 5. He was a normal, healthy, energetic and sometimes stubborn teenager who was full of life and dreams. He was ready for his Junior year at Harding, had a part time job at Mr Pete's Deli, had a girlfriend named Jackie who never left his side through out all this time, Miguel was also a skateboarder and had dreams about owning his own skate park one day. We love and miss him dearly every single day... we are full of questions with no answers....

 

I know what I have to do now. I need to be Miguel’s Voice. I need to share Miguel’s Story and raise awareness on Epilepsy. Since Miguel’s death I’ve become involved with the Minnesota Epilepsy Foundation and begun to Advocate. I’ve attended the Rare Disease Day at the U of M, Day at the Capitol and brought Miguel’s story to the State Senate, hoping the state gets some bills passed, Miguel’s family and friends have walked at the 5 de Mayo parade in his honor because we wanted to honor his life and at the same time raised awareness to the type of epilepsy he had. I had brochures made with Miguel’s story and some facts on the typle of Epilepsy that Miguel was diagnosed with to pass out at the parade. We also passed out some purple beads and I had a couple banners done for the parade, one with Miguel’s photos honoring his life and the other raising awareness to Epilepsy. I take advantage and have T shirts made for any new event and have his friends and family purchase them as well. The front of the shirts are usually honoring Miguel with a photo of him and the back of the shirt will always have something about epilepsy on it. Below you will find some pictures. I will never stop sharing his story and making parents aware of what happened to him and so many other children.  He deserves this… anyone battling Epilepsy and or Rare Diseases deserve this.

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