The Severance Clan and my Clan have been friends since Alex was in diapers (he's 14 now, same age as my Hailey who is 6 weeks to the day older than him) and he along with Hailey and his sister Kenzie will probably always be referred to as the "littles" for the rest of my life. It's a long standing inside joke with our group and I'm sure they'll grow to hate it! Alex himself was always additionally "little man" to me. Alex is like another child to me as I've watched him grow along with my kids almost his entire life. I love this "little" like my own.
Alex is a remarkable kid...he is ridiculously smart, clever and funny; a rising star athlete in basketball, soccer, track, cross country, and long jump. But not just that, he has one of the biggest hearts you'll see and a strong work ethic for a 14 year old little.
All seemed to be on track and looking bright for him and his family until this November. I'm posting a condensed version below but I am including the full story in Sarah's words (his mom) if you want to read all the details.
In November, he got oddly tired and then started having vision issues. Those issues got worse quickly over a short span of time and appointments were made with doctors. Alex's condition was quickly worsening and he was admitted to Children's Hospital for further tests. A scan came back showing lesions on his brain that are similar to MS which is what the medical team is leaning towards.
He received some treatments, has made some progress and was released to go home today (11/23/2020). HOWEVER, the 100% prognosis has not been determined yet. They have a long road ahead of them in working with Alex to hopefully regain all his previous functions and learning what the final test results will show; along with multiple follow-up visits with physical therapy, the eye docs, neurology and so forth.
Alex wants nothing more than to fight to go back to his normal life. I'm rooting for that as is everyone else that loves him and his family.
Sarah will be out of work for an extended period of time taking care of Alex on what is hopefully his road to recovery so they will be down to a 1 income family for the forseeable future. Additionally, the medical portion of their bills not covered by insurance are already piling up.
I'm asking that if Alex's story has inspired you at all, to please help however you can. ..whether it's $1 , $20 or more.
The full story in Sarah's words:
He started to be oddly tired early November... we assumed teen sleepy, nothing alarming.
He started to have odd vision issues like the 6th or so of Nov... but it came and went. So still not alarming. It kept happening and getting worse. His eyes and double vision and a blurry and fuzzy but it came and went so every time I wanted to call, it was gone the next day. Friday the 13th he was exhausted and seeing double. Early to bed ronrest his eyes and head. He worked 8-1 Saturday. He came home showered and went to nap. He got up because he had to babysit... but by 6pm he was tippy and slightly stumbling... Sunday we stayed home all day and he was about the same with vision and stumbles...I knew we needed to go in for this... he pretty much didn't get off the couch all day.
I called the eye doc at 9am Monday and got him in at 10:30 ... Doc did an entire work up of Alex's eyes and came up empty handed... he could clearly see he was not ok but found nothing. He suggested our family doctor and and MRI to get more information.
We made a 330 appointment with our family doctor and he ordered blood work and and MRI for us to see what was up.
I got the MRI set up for Wednesday at 11am. He was very nauseous Wednesday morning... he tossed his cookies over 4 times. (It was every time we had to move him) He made it thru the MRI and we went home.
Waited for the reading and information to come in... 5pm our doctor called us and said its abnormal and you will need to go to Children's ER tonight or tomorrow to streamline what's happening... due to the vomiting we went immediately because of fear of dehydration plus the abnormal MRI... got to the ER and they took us immediately to a room and started their own work on him...
He was clearly deteriorating...I could see exhaustion setting in and some lack of coordination. He was in the ER about 5 hours
He was pretty much lifeless from that point Wednesday untill Friday...it was scary. I didn't know if he was not ok... or resting or just doing nothing cause it was better.
About midnight they finally admitted him and hooked him up to an IV....
They took a bunch of blood for tests and decided the neuro floor was the way to go...
We got a room. Had a few things set up and were able to sleep... well he was I was just trying to not cry all night.
So the whispers of MS and other scary words were in the air and they had set up another 2 MRI's for him the next day... we had a team of doctors ready for Friday. Specialty doctors of neurology and opthomology.
We had physical therapy people and occupational therapy people
We had a medical team that was overseeing everything.
We had lots going on on Thursday.
He was gone for 4.5 hours for the MRI's and it was another hour for a procedure called an LP. Lumbar puncture (Spinal fluid needed to be removed and pressure checked and tested for antibodies)
They all came in his room and ran tests on him .... he was so exhausted he barely made it thru them all, he was this way all day Thursday and Friday
They took blood again I think Thursday for even more and different tests...
He just laid there and slept and was out of it ... he was beyond exhausted... once they officially had the MRI scans back they saw lesions on his brian that were similar to MS and a bunch of blood work came back eliminating infectious diseases and other possible issues...neurologists decided it was a demylination disease and now needed to pin point which one... MS and NMO are the two they are focused on...they are leaning on MS.
They treat them both the same initially so we had 5 treatments. 1 a day for 5 days and if that didn't work they had bigger more aggressive plans.
1st dose went in thru and IV at like 7pm Thursday... he was still not moving much or eating or drinking ... they had him on and IV the entire time. He finally had a small burst of awake time Friday morning... I knew it was the meds doing the talking ... but he was awake and ate and drank and went to the bathroom. He then crashed and didn't move much for about half the day... his next dose was at 4pm Friday and then suddenly perked up again and we celebrated with dinner and another bathroom trip and he was back out.
Yet we celebrated the small victory of food and out of bed every time even though it was only a couple min.
Saturday morning he had another burst of energy and he ate breakfast and chatted with his dad and then they took him for his 1st walk in the hall... he needed a walker and nurse. It was ok but not great. He passed out hard for the afternoon and got dose 3 at 2pm... he woke up and was a chatter box and ate again!! Took another walk... we celebrated ALL the small victories!! Moving and eating and drinking were things he had to do before we could leave.
Saturday night he was such a chatter box we had him call a few friends and he just lit up even more...
Side note: his eyes were closed Wed. till about Friday night they were a little more open. Saturday about half the day his eyes were open but squinting or winking so he only had to use one, or the vision was double. About 85% of the day Sat. they were open.
By Sunday he took 4 walks and doing 2 laps each time. This was amazing progress!! He ate breakfast, lunch, and dinner.!! More progress!!! Lots of good things and at noon he had does 4 of his meds.
Every day we had neuro come in two times and one visit with pt, ot, and medicine team. They all ran tests of strength and coordination...
Alex was improving daily from Friday night on, .. they were liking what they saw.
The few things they really did some focus on was getting moving with a walker and his balance...( we came home with a walker) we need to move 4 times a day and build his endurance with walks and certain exercises.
The left hand and arm coordination was low so he has exercises he needs to do 3 times a day or more with that too.
So now Monday... last dose today at 10am
We saw pt two times, o.t. once, neuro 2 times and the medicine team 3 times . All said good improvements and you can go home soon.
....We finally got the ok to go home at 2pm ish and his response to the treatments was what they wanted and didn't need to do a more aggressive treatment .
We packed up and headed out... it was bitter sweet because I was scared I'd need them.
Alex has 3 medications and many follow ups all before Christmas.
I will keep updating fb as we move forward.
- Dan & Wonderful co-workers
- Cathi Winicki
- Nicole Kuehl
- Diane C Berndt
- Kayla Kumrow
Organizer and beneficiary
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more